back to baltim re! immune deficiency foundation back …...and, you won’t want to miss the fun!...

IDF 2013 National Conference

June 27-29

BACK TO BALTIM RE!


June 27-29

BACK TO BALTIM RE!Immune Deficiency Foundation

NATIONAL CONFERENCE2013

June 27–29, 2013

PROGRAM


June 27-29

BACK TO BALTIM RE!

Immune Deficiency Foundation • 2013 National Conference • June 27–29, 2013

Welcome to the IDF 2013 National ConferenceOur National Conferences always feel somewhat like a homecoming, with everyone gathering together to celebrate our community, but this one, Back to Baltimore truly feels like a reunion to me. Our first two national conferences in 2001 and 2003 were held in Baltimore, mainly because that is where IDF was established. Since then, our conferences have been successfully held in locations around the country, but I must admit that it feels comfortable to return.

I hope you feel the same way as you meet new people, share experiences and learn from our outstanding presenters. There is so much to do and you should take advantage of all the parts of this conference.

Of course, you have already registered for your sessions, but don’t forget about some of the other offerings available at the conference.

• Stop by the USIDNET registry headquarters to register for or update your information in this important national patient consented registry to help advance research and improve the quality of life for patients with primary immunodeficiencies.

• Play the Visit and Win Game in our Exhibit Hall. Not only do you get to learn about products and resources from our enthusiastic exhibitors, but you have a good chance at winning an iPad.

• Learn about the launch of Walk for Primary Immunodeficiency, IDF’s national fundraising walk that offers an incredible opportunity to raise awareness of primary immunodeficiency diseases. Find out what role you might play as this important initiative expands.

• Create your own account in the IDF eHealthRecord, our program specifically developed for those who live with primary immunodeficiencies. IDF staff are ready to help you take charge of all your health information in one place with this online resource.

• Be an inspiration to others by recording an IDF Reel Story. Sign up for a time to videotape your story of living with primary immunodeficiency at the Reel Stories studio and help others who would benefit from hearing about your experience.

And, you won’t want to miss the fun! Our Welcome Reception, Opening Session, Stars & Zebra Stripes Gala, THINK ZEBRA! Silent Auction and Night at the Aquarium are just a start.

We are glad you are Back to Baltimore with IDF and hope your experience is amazing. Enjoy!

Marcia Boyle President & Founder Immune Deficiency Foundation

Table of ContentsIDF 2013 National Conference Highlights ...........................................................................................................................................................1

IDF Youth Program ...................................................................................................................................................................................................2-3

National Conference Sponsors ................................................................................................................................................................................4

Additional Sponsorships............................................................................................................................................................................................4

Exhibit Hall ................................................................................................................................................................................................................... 16

Conference Information ....................................................................................................................................................................................17-18

IDF 2013 National Conference Sessions and Activities ..........................................................................................................................19-33

Professional Medical Education Program ........................................................................................................................................................ 34

Hotel Floor Plan ....................................................................................................................................................................................................36-37


June 27-29

BACK TO BALTIM RE!

www.idfnationalconference.org 1

IDF 2013 National Conference HighlightsIDF ADVOCACY DAYCome a day early and bring your whole family to Capitol Hill to meet with your Congressperson on Thursday, June 27. IDF will make travel arrangements from Baltimore to Washington, D.C. for you to take advantage of this opportunity to spread awareness of primary immunodeficiency diseases to policymakers and show legislators that we are here and we have a voice!

ORIENTATION FOR FIRST TIMERSIf this is your first time attending an IDF National Conference, or if you feel the need for an update, be sure to attend this session on Thursday for an overview of the conference activities and events. Find out about ways to get the most out of the conference, how to meet others in the community and not miss any of the opportunities the weekend provides. We are glad you are here!

WELCOME TO BALTIMORE RECEPTIONJoin IDF on Thursday evening as we renew old friendships, meet new acquaintances and launch our Back to Baltimore Conference-where IDF first began. You will learn about opportunities the conference offers as you meet conference presenters, industry sponsors, IDF volunteers, board members and staff. Heavy hors d’oeuvres and drinks will be served.

HEALTHCARE AND LIFE MANAGEMENT PRESENTATIONS Choose from almost 40 sessions to attend! World-renowned healthcare professionals will share their time and expertise with patients and families to help you better understand and manage your primary immunodeficiency disease. Take advantage of the opportunities to learn from professionals who will share helpful ideas you can use to help improve your daily life.

STARS & ZEBRA STRIPES GALA Oh, say can you see… any great auction items at the fabulous silent auction?

Join us on Friday night for the STARS & ZEBRA STRIPES GALA, inspired by Baltimore’s own Francis Scott Key, the American lawyer and amateur poet who wrote the words to the “The Star-Spangled Banner.” Enjoy an evening of music, dinner, recognitions and an amazing silent auction.

IDF EXHIBIT HALL - VISIT AND WIN GAME!Be sure to allow enough time in your schedule to visit the Exhibit Hall and you could be the winner of a an iPad®. Simply visit all of the booths in our amazing Exhibit Hall, get their sticker on your entry card and learn about the services and products available to the primary immunodeficiency community. Turn in your completed card to the Registration Desk to be entered in the drawing.

IDF NIGHT AT THE NATIONAL AQUARIUMThe entire family will make long-lasting memories at one of Baltimore’s most popular attractions, the National Aquarium. Saturday evening will begin with a barbeque dinner overlooking the dazzling Inner Harbor. Then, IDF will have the entire aquarium to ourselves where you and your family can discover aquatic treasures to your heart’s delight while enjoying dessert at the conclusion of the conference.

YOUTH PROGRAMS FOR OUR YOUNGER ATTENDEESFun, age-appropriate activities and educational sessions are planned for everyone in the family, even as young as six months old! Be sure to register your kids for one of the IDF Youth Programs including, Childcare (ages 6 months-4 years), Kids Club (ages 5-9 years), ‘Tween Scene (ages 10-12 years) or the Teen Program (ages 13-18 years).

PROFESSIONAL MEDICAL EDUCATION PROGRAMIDF and the Clinical Immunology Society invite healthcare professionals to attend an Update in Diagnosis and Management of Primary Immunodeficiency program on Saturday, June 29. This special medical track for healthcare professionals will feature sessions about primary immunodeficiency diseases and offer Continuing Medical Education (CME) credits for participants.


June 27-29

BACK TO BALTIM RE!


YOUTH PROGRAM HOURSFriday, June 28, 2013 7:00 am to 10:00 pm Saturday, June 29, 2013 7:00 am to 7:00 pm

YOUTH WILL BE DIVIDED BY AGE INTO THE FOLLOWING GROUPS: Childcare (ages 6 months - 4 years) Kids Club (ages 5 - 9 years) ‘Tween Scene (ages 10 - 12 years) Teen Program (ages 13 - 18 years)

Please drop off and pick up all youth in the East Building-First Floor. Rooms and sessions are subject to change.

IDF Youth Program

Time Childcare Kids Club Tween Scene Teen Escape

6 months - 4 years 5 - 9 years 10 - 12 years 13 - 18 years

Friday, June 28

7:00 - 8:00 AM Breakfast & Free Time Breakfast & Free Time Breakfast & Free Time Breakfast & Free Time

8:00 - 8:30 Welcome & Hello Activity Welcome & Warm Up Welcome & Warm Up Welcome & Warm Up

8:30 - 9:15 Age appropriate activities Our Immune System (5-7)

Kid Chat (8-9 PI)

Crafts & Games (8-9 sibs)

Be an ImmuKNOWlogist (PI)

Tween Talk (Sibs)

Scavenger Hunt

9:15 - 10:00 Age appropriate activities Our Immune System (8-9)

Kid Chat (5-7 PI)

Crafts & Games (5-7 sibs)

Be an ImmuKNOWlogist (Sibs)

Tween Talk (PI)

Opening Session

10:00 - 10:15 Snack Snack Snack Snack

10:15 - 11:00 Exhibit Hall Visit Exhibit Hall Visit Exhibit Hall Visit Exhibit Hall Visit

11:00 - 11:45 Age appropriate activities Scavenger Hunt (5-7)

Kid Chat (8-9 Sibs)

Crafts & Games (8-9 PI)

Health Summit Meeting of the Minds (13-15)

Challenge Activity (16-18)

11:45 - 12:30 Age appropriate activities Scavenger Hunt (8-9)

Kid Chat (5-7 Sibs)

Crafts & Games (5-7 PI)

Around the World Challenge

Meeting of the Minds (16-18)

Challenge Activity (13-15)

12:30 - 2:30 PM Lunch with Family Lunch with Family Lunch with Family Lunch with Family

2:30 - 3:15 Quiet Activities, Rest Time Happy, Healthy You Scavenger Hunt Immunology 101 & Treatment Options


3:30 - 4:15 Age appropriate activities Super Hero Reach for the Stars The Sky is the Limit

4:15 - 5:00 Age appropriate activities Choice Time Choice Time Challenge Activity

5:00 Parent Pick Up Parent Pick Up Parent Pick Up Parent Pick Up

5:00 - 6:00 Free Time with Family Free Time with Family Free Time with Family Free Time with Family

6:00 - 7:30 Dinner & Activities Dinner & Activities Dinner & Activities Dinner & Activities

7:30 - 8:30 Magic Show Magic Show Magic Show Magic Show

8:30 - 10:00 Activities, Games & Fun Activities, Games & Fun Activities, Games & Fun Activities, Games & Fun


June 27-29

BACK TO BALTIM RE!


Time Childcare Kids Club Tween Scene Teen Escape

6 months - 4 years 5 - 9 years 10 - 12 years 13 - 18 years

Saturday, June 29

7:00 - 8:00 AM Breakfast & Free Time Breakfast & Free Time Breakfast & Free Time Breakfast & Free Time

8:00 - 8:30 Good Morning Game Good Morning Challenge Good Morning Challenge Good Morning Challenge

8:30 - 9:15 IDF Carnival IDF Carnival Game Show Ask the Medical Experts

9:15 - 10:00 Age appropriate activities Game Show IDF Carnival Game Show


10:15 - 11:00 Age appropriate activities Making Connections Making Connections IDF Carnival

11:00 - 11:30 Age appropriate activities Choice Time Choice Time Making Connections

11:30 - 12:15 Lunch Lunch Lunch Lunch

12:15 PM Age appropriate activities Depart for Science Center Depart for Science Center Depart for Science Center

12:30 - 4:00 Age appropriate activities Science Center Visit Science Center Visit Science Center Visit

4:00 - 4:30 Age appropriate activities Travel to Hilton Travel to Hilton Pick up & Travel to Hilton

4:30 - 5:00 Age appropriate activities Free Time Free Time Free Time

5:00 Parent Pick Up Parent Pick Up Parent Pick Up Parent Pick Up

IDF Youth Program

IN ADDITION TO GREAT FOOD, GAMES, MOVIES AND FUN, JOIN US ON FRIDAY EVENING FOR…High Energy Magic and Comedy Show by Speed

Experience the High Energy Magic and Comedy of one of the East Coast’s premiere entertainers...Speed. Speed is the original “High Energy Magician and Illusionist” known for his hyperactive, fast-paced, fun and modern performance style. This amazing magician has performed over 3,500 live shows across the entire East Coast and Canada over the past 18 years. Speed has been featured in many newspapers, TV, Internet and radio station programs.


June 27-29

BACK TO BALTIM RE!


National Conference Sponsors

LEGACY SPONSORS

Baxter HealthcareCSL Behring

Grifols

SILVER SPONSORSBiotest Pharmaceuticals

IgG America/ASD Healthcare/US BioservicesOctapharma

Sigma-Tau Pharmaceuticals

Additional SponsorshipsBAXTER HEALTHCAREAdvocacy DayWelcome to Baltimore ReceptionBreakfast SymposiumOpening SessionName Badge Lanyards

CSL BEHRINGAdvocacy DayStars and Zebra Stripes GalaBreakfast SymposiumIDF Studio

GRIFOLSAdvocacy DayIDF Night at the National AquariumYouth ProgramConference BagsScholarshipsKey Cards

SIGMA-TAU PHARMACEUTICALSScholarshipsNewborn Screening Session

ADDITIONAL SCHOLARSHIPSIDF SCID initiativeJudy DeanSCID Angels for Life FoundationArlan Sprague FamilyVidara TherapeuticsWiskott Aldrich FoundationIDF Lila Albin Fund

Silent AuctionFriday, June 28, 2013 - Holiday Ballroom Foyer

Bidding Opens at 5:00 p.m. and concludes at 7:30 p.m. Winners will be notified after 9:00 p.m.

Q: I brought an item to donate to the Silent Auction. Where should I bring it?

A: Bring your item to the IDF Information Desk by 10:00 a.m. on Friday, June 28, 2013.

Q: When and where can I view all the items in the Silent Auction?

A: A list of items can be found in the Silent Auction Booklet. The Silent Auction will be set up on tables in the Holiday Ballroom Foyer. Bidding will begin at 5:00 p.m. and end at 7:30 p.m.

Q: How will I know if I won something?

A: Winners will be notified at the Stars & Zebra Stripes Gala on Friday night, after 9:00 p.m.

Q: Where can I pay for and pick up any auction items I win?

A: Come to the Silent Auction payment desk in the Holiday Ballroom Foyer immediately after the Gala to collect your items. Credit cards are the preferred method of payment. If you don’t pick up your item Friday night, please be sure to come by the IDF Information Desk before 1:00 p.m. on Saturday, June 29 to claim your item.

RAFFLE: There will be a raffle drawing for prizes on Friday evening. For those of you who raised money through the THINK ZEBRA! initiative before the conference, you will find a raffle ticket in your registration packet.

Additional Raffle Tickets can be purchased for $5 each or 5 for $20 on Friday evening.

TM60% Black

60% Black

PMS 278

PMS 376

Silent Auction

Q: Can I still make a donation to IDF through THINK ZEBRA?

A: Absolutely! You can make a donation at the IDF Information Desk. Gifts will be accepted through THINK ZEBRA! until 12:00 noon on Friday, June 28, 2013 in order to count for the prizes. Of course gifts will always be accepted.

Q: I’ve raised money through THINK ZEBRA! offline. Where can I turn in my checks?

A: Visit THINK ZEBRA! at the IDF Information Desk to submit your checks and forms.

THINK ZEBRA! Initiative

THINK ZEBRA! is the Immune Deficiency Foundation’s fundraising and awareness initiative. In medical school, many doctors learn the saying, “when you hear hoof beats, think horses, not zebras” and are taught to focus on the likeliest possibilities when making a diagnosis, not the unusual ones. However, sometimes physicians need to look for a zebra.

Patients with primary immunodeficiency diseases are the zebras of the medical world. We are teaching the world about zebras while raising funds to help promote awareness of primary immunodeficiency diseases.

So join us on Friday night for the THINK ZEBRA! Silent Auction starting at 5:00 p.m. in the Holiday Ballroom Foyer and the Stars & Zebra Stripes Gala in the Holiday Ballroom from 6:30 p.m. until 9:30 p.m.

Make Your Move.Supporting people as they make moves along their primary immunodeficiency (PI) journey. At Baxter, that’s been the driving force of our long commitment to patients, families, and the Immune Deficiency Foundation (IDF).

We are proud of our collective efforts to educate and help empower people living with PI. Our goal is to make moves to support you at any point on your PI journey. Make your move to booth #2, at the IDF 2013 National Conference.

You’re not alone, we’re on your team! www.ImmuneDisease.com

Baxter is a registered trademark of Baxter International Inc.April 2013 BIOTI0078

Building relationships and

partnerships

Inspirational information

for all

Visit us at

Booth #2

Raising PI awareness

Advocates for PI

support

Supportive educational

tools just for you!

If you are a Hizentra patient or caregiver

Get connected through

What is Voice2Voice?Voice2Voice connects you with advocates who have direct experience with Hizentra and know what it’s like to live with primary immune deficiency (PIDD).

What is a Voice2Voice advocate?Advocates are peers you can share your story with. They can help answer nonmedical questions* and connect you to helpful resources.

Sign up for Voice2Voice.

You can enroll online at Hizentra.com/V2V or call 1-877-355-IGIQ (4447)

for assistance. Scan this code with your smartphone or log on to Hizentra.com/V2V to view stories from Voice2Voice advocates like Janet to see what it’s all about!Janet

For the treatment of PIDD, Hizentra 20% is currently used by more than 10,000 patients and providers.1

* Voice2 Voice advocates are not healthcare professionals or medical experts. For medical questions, please contact your physician. Individuals appearing in the Voice2 Voice videos are compensated by CSL Behring LLC for their time and/or expenses.

Individual responses to therapy with Hizentra may vary.

Reference: 1. Data on File. Available from CSL Behring as DOF HIZ-003.

Important Safety InformationHizentra treats various forms of primary immunodeficiency (PI) in patients age 2 and over.Hizentra should not be used if you have had serious negative reactions to immune globulin (Ig) preparations or a deficiency of an Ig known as IgA. Because Hizentra contains the amino acid proline as stabilizer, patients with hyperprolinemia (too much proline in the blood) should not take Hizentra. Infuse Hizentra under your skin only ; do not inject into a blood vessel. Allergic reactions can occur with Hizentra. If your doctor suspects you are having a bad allergic reaction or are going into shock, treatment will be discontinued. Immediately tell your doctor or go to the emergency room if you have signs of such a reaction, including hives, trouble breathing, wheezing, dizziness, or fainting.Tell your doctor about any side effects that concern you. Your doctor will monitor for potentially serious reactions that have been seen with Ig treatment, including thrombotic events (blood clotting); aseptic meningitis syndrome (brain swelling); osmotic nephropathy (a kidney condition); hemolysis (a blood problem) and transfusion-related acute lung injury. The most common drug-related adverse reactions in the clinical trial for Hizentra were injection-site reactions (swelling, pain, redness, heat or itching); headache; back pain; diarrhea; tiredness; cough; rash; itching; nausea and vomiting.Hizentra is made from components of human blood. The risk of transmission of infectious agents, including viruses and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent, cannot be completely eliminated.Vaccines (such as measles, mumps and rubella) might not work as well if you are using Hizentra. Before receiving a vaccination, tell the healthcare professional that you are being treated with Hizentra. Also tell your doctor if you are pregnant or nursing, or if you plan to become pregnant.Please see brief summary of full prescribing information for Hizentra on adjacent page. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Visit Booth #1to speak with a Voice2Voice advocate

UHIZ014_IDF_Ad_PF.indd 1 5/16/13 11:01 AM

Hizentra®, Immune Globulin Subcutaneous (Human), 20% LiquidInitial U.S. Approval: 2010

BRIEF SUMMARY OF PRESCRIBING INFORMATIONThese highlights do not include all the information needed to use Hizentra safely and effectively. See full prescribing information for Hizentra.

-----------------------------------INDICATIONS AND USAGE----------------------------------Hizentra is an Immune Globulin Subcutaneous (Human) (IGSC), 20% Liquid indicated for the treatment of primary immunodeficiency (PI) in adults and pediatric patients 2 years of age and older.

-----------------------------DOSAGE AND ADMINISTRATION--------------------------------For subcutaneous infusion only. Do not inject into a blood vessel.Start treatment with Hizentra 1week after the patient’s last Immune Globulin Intravenous (Human) (IGIV) infusion, when the patient has received IGIV infusions at regular intervals for at least 3 months.Dosage• Calculate the initial weekly dose of Hizentra needed to achieve a systemic serum IgG

exposure (area under the concentration-time curve [AUC]) not inferior to that of the previous IGIV treatment.

Initial dose = Previous IGIV dose (in grams) x 1.53 No. of weeks between IGIV doses

To convert the dose in grams to milliliters (mL), multiply the calculated dose (in grams) by 5.

• Adjust the dose of Hizentra over time based on clinical response and serum IgG trough levels.

Measure the serum IgG trough level during IGIV therapy prior to switching to Hizentra and again after 2 to 3 months of treatment with Hizentra. Adjust the dose to achieve a serum IgG trough level that is approximately 290 mg/dL higher than the last trough level during prior IGIV therapy.

Administration• Infusion sites – Abdomen, thigh, upper arm, and/or lateral hip. Use up to 4 injection

sites simultaneously, with at least 2 inches between sites.• Infusion volume – For the first infusion, up to 15 mL per injection site. This may be

increased to 20 mL per site after the fourth infusion and to a maximum of 25 mL per site as tolerated.

• Infusion rate – For the first infusion, up to 15 mL/hr per site. This may be increased, to a maximum of 25 mL/hr per site as tolerated. However, the maximum flow rate is not to exceed a total of 50 mL/hr for all sites combined.

-------------------------------DOSAGE FORMS AND STRENGTHS----------------------------0.2 g/mL (20%) protein solution for subcutaneous injection

--------------------------------------CONTRAINDICATIONS ------------------------------------• Anaphylactic or severe systemic reactions to human immune globulin or components of

Hizentra, such as polysorbate 80• Hyperprolinemia (Hizentra contains the stabilizer L-proline)• IgA-deficient patients with antibodies against IgA and a history of hypersensitivity

----------------------------------WARNINGS AND PRECAUTIONS----------------------------• IgA-deficient patients with anti-IgA antibodies are at greater risk of severe

hypersensitivity and anaphylactic reactions. Discontinue use if hypersensitivity reaction occurs.

• Thrombotic events have been reported with the use of immune globulin products, including Hizentra.

• Aseptic meningitis syndrome has been reported to occur with IGIV or IGSC treatment (5.3).• Monitor patients for reactions reported to occur with IGIV treatment that may occur

with IGSC treatment, including renal dysfunction/failure, thrombotic events, hemolysis, and transfusion-related acute lung injury (TRALI).

• Products made from human plasma can contain infectious agents, e.g., viruses and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent.

------------------------------------ADVERSE REACTIONS---------------------------------------The most common adverse reactions, observed in ≥5% of study subjects, were local reactions (i.e., swelling, redness, heat, pain, and itching at the injection site), headache, diarrhea, fatigue, back pain, nausea, pain in extremity, cough, rash, pruritus, vomiting, abdominal pain (upper), migraine, and pain.

To report SUSPECTED ADVERSE REACTIONS, contact CSL Behring Pharmacovigilance at 1-866-915-6958 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

-----------------------------------DRUG INTERACTIONS-----------------------------------------The passive transfer of antibodies may:• Lead to misinterpretation of the results of serological testing.• Interfere with the response to live virus vaccines.

-----------------------------USE IN SPECIFIC POPULATIONS----------------------------------• Pregnancy: No human or animal data. Use only if clearly needed.• Pediatric: No pediatric-specific dose requirements are necessary to achieve

the desired serum IgG levels.

Storage and HandlingWhen stored at room temperature (up to 25°C [77°F]), Hizentra is stable for up to 30 months, as indicated by the expiration date printed on the outer carton and vial label. DO NOT FREEZE. Do not use product that has been frozen. Do not shake. Keep Hizentra in its original carton to protect it from light. Revised: October 2011

Choose Hizentra

The first and only 20% lg therapy deliberately designed for SCIg use

Hizentra is manufactured by CSL Behring AG and distributed by CSL Behring LLC. Hizentra is a registered trademark of CSL Behring AG. Voice2Voice is a service mark of CSL Behring LLC.

©2013 CSL Behring LLC 1020 First Avenue, PO Box 61501, King of Prussia, PA 19406-0901 USA www.CSLBehring-us.com www.Hizentra.com HIZ13-04-0050 4/2013

Sign up for Voice2Voice. You can enroll online at Hizentra.com/V2V or call 1-877-355-IGIQ (4447) for assistance.

UHIZ014_IDF_Ad_PF.indd 2 5/16/13 11:01 AM

Come see me, Iggy, at booth 3!

And learn more about how Grifols connects to the

PIDD community.

We are one of the largest companies in the plasma therapeutics industry with a worldwide presence

1943

We have developed plasma therapies for more than 70 years

Today

SAFETY We put your safety first with our state-of-the-art manufacturing processes

WE’RE ALL CONNECTED

...THROUGH OUR COMMITMENT TO PIDD!

© 2013 Grifols Inc. All rights reserved. Printed in USA. June 2013 GX59-0513

S:7.5”S:10”

T:8.5”T:11”

B:8.75”B:11.25”

IgG America, US Bioservices and ASD Healthcare areProud Supporters of the Immune Deficiency Foundation

> All supplies and equipment are shipped directly to you

before treatment date.

> An experienced infusion nurse will provide thorough

teaching for subcutaneous infusions.

> You will receive personalized service and detailed

information from our specialist pharmacists.

> We provide comprehensive reimbursement services.

> Infusions dates and times are scheduled according to

your needs, including evenings and weekends. Our

nurses will stay throughout all IVIG infusions.

IgG America and US Bioservices, national infusion pharmacies, specialize in providing immune globulin services in the home. We have provided thousands of treatments that have enabled people to successfully manage their condition and maintain their lifestyle.

Our services are available throughout the United States and we have access to all brands of immune globulin. IgG America and US Bioserivces have both IVIG and subcutaneous administration protocols.

We invite you to call our offices for a private, no-cost consultation to coordinate home IVIG or subcutaneous treatments. Please call us toll free at 877.674.9700 or visit www.iggamerica.com and www.usbioservices.com.}Stop by the booth to play the games Whack-a-Germ,Phagocyte Force and Jigsaw Puzzler

BIOTEST and the IDF

From plasma collection, manufacturing, and distribution of plasma proteins—from nature for life—we are continually raising the bar and setting new standards of excellence.

Please join Biotest at Booth #16. Learn more about our company and our products—and how to live your life insPIred.

Biotest is a proud partner with the Immune Deficiency Foundation. We are honored to be part of the IDF 2013 National Conference.

For more information, visit www.BIOTESTpharma.com.

Solid Foundation. Continous Innovation.

BIOTEST and the BIOTEST & Design marks are trademarks and/or registered trademarks of BIOTEST AG.InsPIred is a trademark of Biotest Pharmaceuticals Corporation. This information is intended only for residents of the United States.

…and Helping You Live Your Life insPIred™

The InsPIred program is dedicated to supporting the Primary Immunodeficiency (PI) community. We are committed to developing support tools and resources by continuing to listen and address the needs of PI patients, caregivers, and healthcare providers.

Come to our booth and draw or write about what inspires you! Help launch our new program, insPIred, and share your inspiration with the PI community. Your entry will be shown at our booth (Booth #16) and on our BIOTESTinsPIred.com website. Biotest will donate $25 to the IDF for each submission.

© 2013 Biotest Pharmaceuticals Corporation. All rights reserved. 6/13 10580-00-GEN-052313_R00

To join the community, visit www.BIOTESTinsPIred.com.

BIOTEST and the IDF

From plasma collection, manufacturing, and distribution of plasma proteins—from nature for life—we are continually raising the bar and setting new standards of excellence.

Please join Biotest at Booth #16. Learn more about our company and our products—and how to live your life insPIred.

Biotest is a proud partner with the Immune Deficiency Foundation. We are honored to be part of the IDF 2013 National Conference.

For more information, visit www.BIOTESTpharma.com.

Solid Foundation. Continous Innovation.

BIOTEST and the BIOTEST & Design marks are trademarks and/or registered trademarks of BIOTEST AG.InsPIred is a trademark of Biotest Pharmaceuticals Corporation. This information is intended only for residents of the United States.

What’s the difference between a disease affecting 300 and 300,000,000?

Sigma-Tau Pharmaceuticals

Dedicated to providing new therapiesand new hope to people with rare diseases.

To us, nothing.

sigmatau.com

SigmaTau ad8.5x11.indd 1 9/23/11 11:03 AM


June 27-29

BACK TO BALTIM RE!


Be sure to allow adequate time in your daily schedule to visit the Exhibit Hall located in the Key Ballroom at the Hilton Baltimore. Take time to speak with representatives of companies that provide services or products related to primary immunodeficiency diseases. Promotional materials will not be permitted in the meeting rooms, registration or reception areas or any location other than the Hilton Baltimore designated exhibit space. Respecting confidentiality, attendees are not required to provide name and/or contact information to any exhibitor for any reason.

Play IDF Exhibit Hall “Visit and Win” Game!It’s easy, it’s fun and you can win an iPad®!

Simply visit all of the booths in our amazing Exhibit Hall and learn about the services and products available to the primary immunodeficiency community. Ask each exhibiting company to place a sticker on your entry card next to their company/organization name.

When your entry card is full, turn in your completed card to the Registration Desk to be entered in the drawing. The winner will be announced on Saturday evening at the National Aquarium.

EXHIBIT HOURSFriday, June 28, 2013 10:30 am-5:30 pm Saturday, June 29, 2013 10:30 am-5:00 pm

Exhibit Hall

BOOTH # EXHIBITORS

1 CSL Behring

2 Baxter Healthcare

3 Grifols

4 Intrapump Infusion Services

6 Plasma Protein Therapeutics Association

7 RMS Medical Products

8 IDF eHealth Record

9 Patient Services Inc.

10 Coram Healthcare

11 Orsini Healthcare

12 Walgreens-Ig Therapy Program

13 Octapharma

14 Accredo Health Group

15 Vidara Therapeutics

16 Biotest Pharmaceuticals

17 IDF/USIDNET

18 BioRx

19 IgG America / ASD Healthcare / US Bioservices

20 BioScrip Specialty Pharmacy

21 ViaCord

22 National Organization for Rare Disorders

1 2 3

4

6

7

8

9

10

11

12

13

14

15

16

17

18

19

20

21

22


June 27-29

BACK TO BALTIM RE!


Conference InformationLOCATIONAll educational sessions, exhibits, registration and social events held as a part of the IDF 2013 National Conference will take place at the Hilton Baltimore unless otherwise noted. Please see page 40 for a map of the hotel’s meeting rooms where the programs are scheduled.

Hilton Baltimore 401 West Pratt Street Baltimore, MD 21202

Check-in: 4:00 pm Check-out: 12:00 pm

NO SMOKINGThe hotel is 100% smoke free. Smoking is only permitted in designated smoking areas. More information on where smoking is permitted may be obtained from the hotel.

REGISTRATIONRegistration materials and information will be available at the IDF registration desk located on the 2nd floor of the hotel. The desk will be open during the following hours:

Wednesday, June 26 2:00 pm-8:00 pm Thursday, June 27 6:45 am-8:00 pm Friday, June 28 7:00 am-6:00 pm Saturday, June 29 7:00 am-6:00 pm

DRIVING DIRECTIONS TO HILTON BALTIMOREFrom 83 South - Follow 83 to Lombard Street. Right on Lombard Street. Left on Green Street, left on Pratt Street. Hotel is 2 blocks on the right.

From I-95 North - Exit 53 (395 North), stay in left lane. Turn left on Camden, right on Paca, right on Pratt Street. Hotel on the right. Please note that during Camden Yards events Camden Street may be closed. From exit 53 follow to Russell Street, turn right on Pratt. Hotel is on the right.

95 South through Ft. McHenry Tunnel - Take Ft. McHenry Tunnel to Exit 53 (395 North), stay in left lane. Turn left on Camden, right on Paca, right on Pratt Street. Hotel on the right. Please note that during Camden Yards events Camden Street may be closed. From exit 53 follow to Russell Street, turn right on Pratt. Hotel is on the right.

CONFERENCE TRANSPORTATION From the Baltimore Washington Thurgood Marshall International Airport (BWI)

Driving directions - Take 195 West to 95 North. Take exit 53 (395 North). Follow for one half mile and turn right on Pratt Street. The hotel will be on the right. Distance from Hotel: 10 mi. Drive Time: 15 min.

Super Shuttle - $13.00 each way (Private van holds up to 10 people- $65.00)

Taxi – approximately $30.00 each way

Light Rail – The most economical way to get from the BWI Airport to the Hilton Baltimore is the Light Rail. The fare for the 20 minute ride is $1.60 each way. The BWI Light Rail Station is located immediately outside the lower level of the terminal building, adjacent to Concourse E. When you get downtown, you will need to get off at the Baltimore Convention Center Stop just outside the Hilton Baltimore entrance.

CONFERENCE PARKINGParking is available at the Hilton Baltimore and the entrance to the parking garage is on Eutaw Street.

Self parking: $28.00 (In/Out privilege) Valet: $40.00 (In/Out privilege)

SPEAKER CHECK-INAll speakers are asked to pick up their materials at the Registration Desk and pre-load your presentations at the Speaker Check in.

TICKETED EVENTSFriday, June 287:30-8:45 am Breakfast Symposium The More You Know: All About Primary

Immunodeficiency Diseases

Sponsored by Baxter Healthcare

12:30-2:30 pm Lunch

6:30-9:30 pm Stars & Zebra Stripes Gala Adult Dinner and awards

Sponsored by CSL Behring

Saturday, June 29

8:00-9:30 am Breakfast Symposium Healthcare Reform Law and the Primary

Immunodeficiency Community


12:00-2:00 pm Lunch

6:30-10:00 pm IDF Night at the National Aquarium

Sponsored by Grifols

Baltimore


June 27-29

BACK TO BALTIM RE!


CONFERENCE ATTIREAll sessions other than the Friday night events are casual attire. All conference sessions will be held in hotel meeting rooms, which are air-conditioned and often chilly. However, please remember, everyone has their own personal preferences for temperature and it is often difficult to control temperatures in a hotel setting. So it is highly recommended to bring along a light jacket or sweater to the session rooms.

Dress for the Stars & Zebra Stripes Gala on Friday Night is festive, with a touch of zebra and a sprinkling of stars, if you wish.

NAME BADGESAll National Conference attendees will receive a name badge with their registration packet. These badges should be worn at all times inside the hotel or participating in national conference off-site activities. Badges will be used to control access to various programs, sessions and events.

IDF NIGHT AT THE NATIONAL AQUARIUMBecause of the escalators and moving walkways at the Aquarium, strollers cannot be used inside. Consider leaving your stroller at home or in the trunk of your car. If you do bring a stroller, Aquarium staff will store it for you and provide a back or front child carrier. The higher vantage point will also provide your children with a better view of many exhibits.

CONFERENCE ETIQUETTEPlease be considerate of others during all educational sessions and turn off all cell phones and pagers or set them to vibrate. Please arrive on time or early for the sessions you plan to attend, allowing time to add extra chairs if necessary.

LOCAL PHARMACYCVS Pharmacy 31 Light Street Baltimore, MD 21202 Phone: 410-685-4843

HILTON BALTIMORE - EMERGENCY PROCEDURESThe Hilton Baltimore is fully prepared to handle different types of situations to assist our guests. The following is information on our emergency procedures:

• The hotel internal emergency number is 66.

• The hotel has an emergency response team 24 hours a day. In the event of an emergency, calling the emergency number 66 will initiate the appropriate response.

• Paramedics, Fire Department, and the Police Department are all located approximately 5 minutes from the hotel.

• Our Security Department, and all MODs, are trained in CPR and First Aid.

• Emergency evacuation routes and procedures are located on the inside of all guest room doors.

NEAREST HOSPITAL AND EMERGENCY ROOMUniversity of Maryland Medical Center 22 S. Greene Street Baltimore, MD 21201-1595 Phone: 800-492-5538

Conference Information


June 27-29

BACK TO BALTIM RE!


IDF 2013 National Conference Sessions and ActivitiesThe IDF 2013 National Conference is packed with sessions and activities that we hope you enjoy. Some sessions are repeated (they are designated) while others are only offered once. This might mean some conflicts in attending everything you want and you may have to choose between two sessions.

Presenters and presentation times are subject to changes and updates. Admission to all educational sessions, special events and meals is included in your registration fee.

To get the most out of the conference, we encourage you to pace yourself and create a schedule that fits your interests and energy level.

*Presenters subject to change

WEDNESDAY, JUNE 26, 2013Time Function Location

2:00 pm – 8:00 pm Registration / Information Desk Open 2nd Floor Foyer

THURSDAY, JUNE 27, 2013Time Function Location

6:45 am – 8:00 pm Registration / Information Desk Open 2nd Floor Foyer

6:45 am – 5:00 pm IDF Advocacy Day

Advocacy Day is an opportunity to spread awareness of primary immunodeficiency diseases to policymakers and show elected officials that this community has a voice. Participants will meet with their Senators and Representatives and discuss issues that impact the primary immunodeficiency disease community, including health insurance costs and research. Attendees will also have the opportunity to enjoy and explore some historical sites of our Nation’s Capital.

Due to transportation arrangements, you must have pre-registered for this event in order to participate.

IDF Advocacy Day Schedule:

• All participants should meet at 6:45 am in Holiday 1-3 for instructions and to pick up your boxed breakfast. If you are going to Advocacy Day, you must attend this briefing.

• Beginning at 7:15 am, buses will load at the side entrance of the hotel on Eutaw Street for the trip to Washington DC.

• The buses will leave promptly at 7:30 am. Each bus will have members of the IDF staff on board to answer questions and assist attendees in preparing for their meetings with Members of Congress.

• Advocates will arrive in Washington, DC around 9:00 am and take a group picture at Union Square, the Grant Memorial, on Capitol Hill before dispersing for their individual meetings with elected officials.

• Following the meetings, buses will depart from Capitol Hill at 3:00pm and 3:30pm for the Hilton in Baltimore, arriving in time for attendees to participate in the Welcome to Baltimore Reception.

Holiday 1-3

12:00 pm – 5:00 pm USIDNET National Patient Registry Consenting Join thousands of patients living with primary immunodeficiency diseases from across the country and register with the United States Immunodeficiency Network (USIDNET) patient registry.

Calloway A-B

12:00 pm – 5:00 pm IDF Reel Stories Recording Offer encouragement and inspiration to others by visiting Studio IDF and record your story for the IDF Reel Stories channel on the IDF website.


Mencken

WED

NESD

AY AND

THU

RSD

AY


June 27-29

BACK TO BALTIM RE!



1:00 pm – 5:00 pm Wiskott Aldrich SyndromeAlessandro Aiuti, MD, PhD San Raffaele Telethon Instintue for Gene Therapy, Milan, ItalyMichael Albert, MD, PhD Dr. von Hausnersches Kinderspital, GermanyMira Barda-Saad, PhD Bar-Ilan UniversityR. Michael Blaese, MD IDF Medical DirectorChristian Braun, MD Massachusetts Institute of TechnologyFabio Candotti, MD National Human Genome Research Institute – NIHMaria Cavazzana-Calvo, MD, PhD Hospital Necker-Enfants MaladesHans Ochs, MD University of Washington – School of Medicine*Please note, Thursday childcare will be available only for families attending the Thursday WAS session. The IDF Youth Program and childcare will be available on Friday and Saturday for all conference participants.Sponsored By: Colburn-Keenan Foundation; Intramural Research Program of NHGRI; Israeli Wiskott Aldrich Syndrome Association; Sigma Nu Georgia Tech; Wiskott-Aldrich Foundation

Paca

4:00 pm – 4:45 pm Orientation for First timers

If this is your first time attending an IDF National Conference, or if you feel the need for an update, be sure to attend this introduction to IDF and an overview of the conference activities and events. Find out about ways to get the most out of the conference, how to meet others in the community and not miss any of the opportunities the weekend provides. We are glad you are here!

Brian Rath IDF Volunteer

Katherine Antilla, MAEd IDF Vice Presidnet, Education & Volunteers

Christine Belser IDF Vice President, Programs & Communications

Key 6

5:00 pm – 6:00 pm Making Connections - Person to Person

The power of community! Meet people like yourself who share similar situations living with a primary immunodeficiency disease and learn from their personal experiences and knowledge. Then share a few ideas yourself. What you know might make a big difference in someone’s life!

Please attend the group that best describes you:

Adult Patients (50 years and up) Key 6

Adult Patients (30-49 years) Key 2

IDF 2013 National Conference Sessions and Activities

THU

RSD

AY


June 27-29

BACK TO BALTIM RE!


THU

RSD

AY AND

FRID

AY


Young Adult Patients (19-29 years)

Key 3

Parents of Children (Birth-10 years)

Key 4

Parents of Youth (11-15 years)

Key 1

Parents of Teens and Young Adults (16 years and up)

Carroll B

Partners of Patients

Carroll A

6:15 pm – 7:30 pm Welcome to Baltimore Reception!

Join IDF as we renew old friendships, meet new acquaintances and launch our Back to Baltimore Conference-where IDF first began. Hear about what opportunities the conference offers as you meet presenters, industry sponsors, IDF volunteers, board members and staff. Heavy hors d’oeuvres and drinks will be served.


Holiday Ballroom

FRIDAY, JUNE 28, 2013 Time Function Location

6:45 am – 6:00 pm Registration / Information Desk Open

7:00 am – 10:00 pm IDF Youth Program - Drop off East Building - 1st Floor

7:30 am – 8:45 am Breakfast Symposium

The More You Know: All About Primary Immunodeficiency Diseases

This session will focus on the basics of primary immunodeficiency diseases, helping everyone to have a better understanding of these complicated diseases. Even if you are a veteran of other introductory presentations, this primer will be a good review and will probably teach you a few new things!

Steven Holland, MD National Institute of Allergy and Infectious Diseases – NIH


Holiday Ballroom

8:00 am – 9:00 am Continental Breakfast Key Ballroom Foyer

9:00 am – 10:15 am Opening Session

Marcia Boyle IDF President and Founder

Charlotte Cunningham-Rundles, MD, PhD Mt. Sinai School of Medicine Principal Investigator – USIDNET

Jay Epstein, MD Director, Office of Blood Research and Review Center for Biologics & Research, US Food and Drug Administration

Holiday Ballroom



June 27-29

BACK TO BALTIM RE!



10:00 am – 5:00 pm USIDNET National Patient Registry Consenting Join thousands of patients living with primary immunodeficiency diseases from across the country and register with the United States Immunodeficiency Network (USIDNET) patient registry.

Calloway A-B

10:00 am – 5:00 pm IDF Reel Stories Recording Offer encouragement and inspiration to others by visiting Studio IDF and record your story for the IDF Reel Stories channel on the IDF website.


Mencken

10:30 am – 12:30 pm It’s All About You! Specific Primary Immunodeficiency Disease Sessions (Select one)

Chronic Granulomatous Disease

Steven Holland, MD National Institute of Allergy and Infectious Diseases - NIH

Harry Malech, MD National Institute of Allergy and Infectious Diseases - NIH

Key 3

Common Variable Immune Deficiency

Charlotte Cunningham-Rundles, MD, PhD Mt. Sinai School of Medicine

Marc Riedl, MD UCLA David Geffen School of Medicine

James Verbsky, MD, PhD Medical College of Wisconsin

Holiday Ballroom

DiGeorge Syndrome

M. Louise Markert, MD, PhD Duke University School of Medicine

Carroll A

Hereditary Angioedema and Complement Deficiency

Kathleen Sullivan, MD, PhD Children’s Hospital of Philadelphia

Stone

Hyper IgE Syndrome

Alexandra Freeman, MD National Institute of Allergy and Infectious Diseases - NIH

Carroll B

Hyper IgM Syndrome

Ramsay Fuleihan, MD Northwestern University – Feinberg School of Medicine

Troy Torgerson, MD, PhD Seattle Children’s Hospital

Tubman B


FRID

AY


June 27-29

BACK TO BALTIM RE!


FRID

AY


IgG Subclass Deficiency and Specific Antibody Deficiency

Terry Harville, MD, PhD University of Arkansas for Medical Sciences

Ricardo Sorenson, MD LSU Health New Orleans – School of Medicine

Key 6

NEMO

Jordan Orange, MD, PhD Texas Children’s Hospital

Marshall Board Room

Selective IgA Deficiency

Joseph Roberts, MD, PhD Duke University School of Medicine

Tubman A

X-Linked Agammaglobulinemia

Howard Lederman, MD, PhD Johns Hopkins Hospital

M. Elizabeth Younger, CRNP, PhD Johns Hopkins Hospital

Key 4

10:30 am – 2:30 pm Severe Combined Immunodeficiency & Combined Immune Deficiency

Rebecca Buckley, MD Duke University School of Medicine

Terry Harville, MD, PhD University of Arkansas for Medical Sciences

Mike Hershfield, MD Duke University School of Medicine

Jennifer Puck, MD University of California – San Francisco

Key 1-2

10:30 am – 5:30 pm Wiskott-Aldrich Syndrome

Alessandro Aiuti, MD, PhD San Raffaele Telethon Instintue for Gene Therapy, Milan, Italy

Michael Albert, MD, PhD Dr. von Hausnersches Kinderspital, Germany

Mira Barda-Saad, PhD Bar-Ilan University

R. Michael Blaese, MD IDF Medical Director

Christian Braun, MD Massachusetts Institute of Technology

Fabio Candotti, MD National Human Genome Research Institute – NIH

Maria Cavazzana-Calvo, MD, PhD Hospital Necker-Enfants Malades (location)

Hans Ochs, MD University of Washington – School of Medicine

Paca



June 27-29

BACK TO BALTIM RE!



10:30 am – 5:30 pm Exhibit Hall Open Key 7-12

12:30 pm – 2:30 pm Lunch & Visit the Exhibit Hall Pick up your boxed lunch in the Key Ballroom-East Foyer Additional lunch tables available in Holiday Ballroom

Key East Foyer

2:45 pm – 3:30 pm Healthcare & Life Management Sessions (select one)

Antibiotic and Antifungal Therapy Options

Gain a better understanding of these treatment options and the decisions your healthcare provider makes when prescribing antibiotic and antifungal therapy. (will be repeated)


Carroll A-B

Families Facing Chronic Illness

Families dealing with chronic illness often face unique challenges. This insightful session will focus on family dynamics and the frustrations and rewards of having a member with a primary immunodeficiency. Strategies on how to relate to family members, find balance and create a nurturing environment will be shared.

John Seymour, PhD, LMFT Minnesota State University – Mankato

Key 1-2

Autoimmunity and Immunodeficiency- What’s the Relationship?

Autoimmune conditions frequently cause problems for patients with primary immunodeficiency diseases. Learn about the insights into how immunodeficiencies can predispose to autoimmunity. (will be repeated)


Key 5

The Connection Between Chronic Sinusitis and Primary Immunodeficiency Diseases

Are you one of the many patients with a primary immunodeficiency who also lives with chronic sinusitis? Learn how to manage one of the most common health complaints leading to an office visit in the U.S. (will be repeated)

Ralph Shapiro, MD Midwest Immunology Clinic

Key 3-4

Allergies and Primary Immunodeficiency Disease

As though primary immunodeficiency diseases don’t provide enough challenges, many patients also face the added burden of dealing with allergies. This session offers helpful information regarding the diagnosis and complications of allergies and ways to relieve the symptoms.

Josh Milner, MD National Institute of Allergy and Infectious Diseases - NIH

Tubman A-B


FRID

AY


June 27-29

BACK TO BALTIM RE!


FRID

AY


Immunoglobulin Therapy

Learn about the benefits of immunoglobulin therapy and the role it plays for patients with primary immunodeficiencies. Both intravenous (IVIG) and subcutaneous (SCIG) therapies will be discussed as well as common reactions to this life-saving therapy and ways to alleviate the side effects. (will be repeated)

Mark Ballow, MD State University of New York at Buffalo

Jordan Orange, MD, PhD Texas Children’s Hospital

Debra Sedlak, CPNP Duke University School of Medicine

Key 6


Autoimmunity and Immunodeficiency- What’s the Relationship? (repeat)

Autoimmune conditions frequently cause problems for patients with primary immunodeficiency diseases. Learn about the insights into how immunodeficiencies can predispose to autoimmunity.


Key 5

Antibiotic and Antifungal Therapy Options (repeat)

Gain a better understanding of these treatment options and the decisions your healthcare provider makes when prescribing antibiotic and antifungal therapy.


Carroll A-B

The Connection Between Chronic Sinusitis and Primary Immunodeficiency Diseases (repeat)

Are you one of the many patients with a primary immunodeficiency who also lives with chronic sinusitis? Learn how to manage one of the most common health complaints leading to an office visit in the United States.

Ralph Shapiro, MD Midwest Immunology Clinic

Tubman A-B

Can I Really Ask that Question? Getting the Answers You Need for Today’s World

This session is designed to cover the issues for people with primary immunodeficiencies that are often left unspoken. Is it OK to get a tattoo? How about Botox? Are there some forms of contraception I should avoid? No question is off limits. This session is intended for adults. (will be repeated)

William Blouin, MSN, ARNP, CPNP Miami Children’s Hospital

Francisco Bonilla, MD, PhD Boston Children’s Hospital

Carla Duff, CCNP, MSN, CCRP University of South Florida


Key 6



June 27-29

BACK TO BALTIM RE!



Managing Depression and Anxiety

Many people feel anxious or depressed at times. Going through difficult situations can lead a person to feel sad, lonely, scared, nervous, or anxious. These feelings are normal reactions to life’s stressors, but some people find it difficult to carry on with normal, everyday functioning. Learn the causes, signs and symptoms, treatments and outcomes of depression and anxiety and what it may mean to you.

Jodi Taub, LCSW Private Practice

Key 3-4

Overview of Gene Therapy and Bone Marrow Transplantation

Showing great promise for treatment success, these therapies are still mysterious to many. Attend this introductory overview to gain insight of what these therapies offer and learn about their future prospects.


Harry Malech, MD National Institute of Allergy and Infectious Diseases - NIH

Jennifer Puck, MD University of California - San Francisco

Key 1-2

5:00 pm – 7:30 pm THINK ZEBRA! Silent Auction Bidding Begins!

Oh, say can you see….any great auction items at the fabulous silent auction? Join us for drinks as you check out the incredible selection of items available, and place your bids.

Holiday Foyer

6:30 pm – 9:30 pm Stars & Zebra Stripes Gala Adult Dinner and Awards

Join us for an evening of music, dinner, recognitions. Dress for the event is festive, with a touch of zebra and a sprinkling of stars, if you wish. Note: This event is for adults only. All youth ages 18 years and younger should attend one of the youth program dinner events. You must register your child for the Youth Program to attend.


Holiday Ballroom

6:00 pm – 10:00 pm Childcare, Kids Club, and ‘Tween Scene

Yankee Doodle Dandy Dinner

All youth can join in the fun of celebrating the red, white and blue! This fun, kid-friendly night of kid-friendly dinner fare, followed by an evening of age appropriate games, activities and entertaining videos is open to all children and youth 6 months to 12 years old. (Participants must be registered for one of the Youth Program to participate in this event.)

East Building - 1st Floor

Teen Star Spangled Celebration Dinner

Targeted specifically for teens and designed for a great time, this party promises an evening of teen pleasing food, activities and movies. (Participants must be registered for the Teen Program to participate in this event.)

East Building - 1st Floor


FRID

AY


June 27-29

BACK TO BALTIM RE!


SATURDAY, JUNE 29, 2013Time Function Location

7:00 am – 6:00 pm Registration / Information Desk Open 2nd Floor Foyer

7:00 am – 5:00 pm IDF Youth Program - Drop off East Building - 1st Floor

8:00 am – 9:00 am Continental Breakfast Key Ballroom Foyer

8:00 am – 9:30 am Breakfast Symposium Healthcare Reform Law and the Primary Immunodeficiency Community

The new healthcare law is now the law of the land. If you wonder how the law affects your family and you, this breakfast symposium is not to be missed. A panel of experts will help decipher some of the issues that affect members of the primary immunodeficiency community as most of the law goes into effect January 1, 2014. Get the latest updates from the people who know the facts, and learn about IDF’s policy initiatives and activities. Interested participants are encouraged to register early. Space and availability are limited and will be determined on a first-come, first-served basis. A buffet breakfast will be served.

Mark Ballow, MD State University of New York at BuffaloMarc M. Boutin, JD National Health CouncilEugene Freund, MD MSPH Centers of Medicare and Medicaid Services (CMS) and Center for Consumer Information and Insurance Oversight (CCIIO)Sue Ramthun Hart Health StrategiesLawrence A. LaMotte IDF Vice President, Public PolicySponsored by CSL Behring

Holiday Ballroom

9:00 am-5:00 pm Professional Medical Education Program

This program is designed for immunologists, allergists, nursing professionals specializing in immunology and other professionals who treat primary immunodeficiency disease. Primary care physicians, including family practitioners and pediatricians will benefit from the program and are encouraged to attend. Pre-registration is required for CME credit.

Paca

10:30 am – 5:00 pm Exhibit Hall Open


SATUR

DAY


June 27-29

BACK TO BALTIM RE!



9:45 am – 11:00 am Healthcare & Life Management Sessions (select one)

Common Variable Immune Deficiency Frequently Asked Questions

There never seems to be enough time for all the questions to be answered for patients with CVID. So, to fill that need, this special session was created by collecting questions from individuals and family members who live with CVID throughout the country. Those questions will be presented to our expert panel to get their answers about this relatively common form of primary immunodeficiency disease.

Charlotte Cunningham-Rundles, MD, PhD Mt. Sinai School of Medicine

Marc Riedl, MD UCLA David Geffen School of Medicine


Holiday Ballroom

Newborn Screening: SCID, Related T-Cell Lymphocyte Deficiencies and Beyond

Learn about the status of newborn screening for SCID and related T-Cell Deficiencies, as well as what we have learned and possibilities in the future for screening for other primary immunodeficiencies. Also, find out what you can do to make progress in your own state to advance this miraculous screening.

Amy Brower, PhD American College of Medical Genetics and Genomics


Jennifer Puck, MD University of California – San Francisco

Emily Hovermale, MSW IDF Senior Public Policy Manager

Key 1-2

IDF and You

What’s in it for you? You might think you know about all the materials and resources that IDF offers, but do you really? Not only does IDF have a wealth of groundbreaking education and information developed by dedicated professionals- healthcare, insurance, and life management advocates, but we have set a high standard for our comprehensive website and social media designed to connect the PI community. IDF has even developed tools to keep track of personal health records. Come to this session to discover what IDF offers—you might be surprised at what can be helpful to you! Plus, you might find a few ways you can be involved and make IDF even stronger!

IDF Staff

Key 3-4

10:00 am – 3:00 pm USIDNET National Patient Registry Consenting Join thousands of patients living with primary immunodeficiency diseases from across the country and register with the United States Immunodeficiency Network (USIDNET) patient registry.

Calloway A-B

10:00 am – 3:00 pm IDF Reel Stories Recording Offer encouragement and inspiration to others by visiting Studio IDF and record your story for the IDF Reel Stories channel on the IDF website.


Mencken


SATU

RD

AY


June 27-29

BACK TO BALTIM RE!



11:15 am – 12:00 pm Healthcare & Life Management Sessions (select one)

Health Insurance and You

Learn the art and language of health insurance to better communicate with private health insurance companies through strategies that will lead to an improved relationship and prevent claim denials. Gain greater understanding of how your medical provider and you can work with your insurance company and learn the steps necessary to undertake the appeal/grievance process. (will be repeated)

Kristen Epland, FNP-C Midwest Immunology Clinic

Nichole Clark IDF Patient Advocate Manager

Key 3-4

Immunizations: Understanding the Risks and Benefits

For each of the over 185 types of primary immunodeficiencies, the response to vaccinations may be different. In this session, participants will learn how vaccines work, how to know if a vaccine will help or harm your child and the differences between live or killed vaccines.

E. Richard Stiehm, MD University of California – Los Angeles

Tubman A-B

Women’s Issues

This discussion will address concerns faced by women living with primary immunodeficiencies, covering reproductive health matters and health maintenance throughout all the phases of a woman’s life. Results of a national survey of 750 female patients conducted by IDF in 2011, Primary Immunodeficiency & Women’s Reproductive Health, will be presented. This will include their issues becoming pregnant or maintaining pregnancies, Ig replacement therapy before, during and after pregnancy and the health histories of the children of mothers with primary immunodeficiency diseases.

Adi Gundlapalli, MD University of Utah School of Medicine

Patricia Lugar, MD, MS Duke University School of Medicine

Christopher Scalchunes, MPA IDF Director of Survey Research

Holiday 1-3

Managing Gastrointestinal Complications

Discover different ways to monitor, diagnose, and treat G.I. issues, conditions that trouble many patients with primary immunodeficiencies, in this valuable session. (will be repeated)

Peter Mannon, MD, MPH The University of Alabama at Birmingham

Key 1-2

Parenting Skills for the Whole Family

Parenting is said to be the toughest job for which we receive the least training. And parents dealing with children with chronic illness often feel like they need extra training. This session will focus not only on the child who is a patient but also on other children in the family.

John Seymour, PhD, LMFT Minnesota State University - Mankato

Key 6


SATUR

DAY


June 27-29

BACK TO BALTIM RE!



Immunoglobulin Therapy (repeat)

Learn about the benefits of immunoglobulin therapy and the role it plays for patients with primary immunodeficiencies. Both intravenous (IVIG) and subcutaneous (SCIG) therapies will be discussed as well as common reactions to this life-saving therapy and ways to alleviate the side effects.


Debra Sedlak, CPNP Duke University School of Medicine

Holiday 4-6

12:00 pm – 2:00 pm Lunch & Visit the Exhibit Hall Pick up your boxed lunch in the Key Ballroom-East Foyer Additional lunch tables available in Holiday Ballroom

Key East Foyer


Communicating with your Healthcare Team

Was your last visit to your provider as productive as you wanted? This session concentrates on ideas of how you can prepare to make the best use of your time with your healthcare team and have a great clinical experience. This session will include helpful information about the IDF eHealthRecord and its role in making your next appointment one of your best yet.

Vivian Hernandez-Trujillo, MD Miami Children’s Hospital

Colin Seal IDF Program Manager

Tubman A-B

Genetic Counseling for Families

Genetic counseling helps translate the results of genetic testing into practical information and enable individuals and families to understand and reach informed decisions regarding family planning. Specific tests and issues for those with a history of primary immunodeficiency diseases will be discussed.

Joie Davis, PNP-BC, APNG National Institute of Allergy and Infectious Diseases – NIH

Holiday 1-3

Government Assistance Programs: Medicare, Medicaid and Social Security Income

Maneuvering through the maze of Medicare, Medicaid or Social Security Income can be frustrating and confusing. In this session, experts will explain how to successfully tackle these programs and make them work for you.

William Leach Patient Services, Inc.

Key 1-2


SATU

RD

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June 27-29

BACK TO BALTIM RE!


SATUR

DAY


Making a Seamless Transition to Adulthood

The transition from a dependent teen to an independent adult is difficult, more so for those who have to manage a chronic illness such as a primary immunodeficiency. All aspects of the lives of young adults- social, educational, career, and family will be explored.


Jodi Taub, LCSW Private Practice Social Worker

Key 3-4

Living Life to the Fullest as an Adult with Primary Immunodeficiency

For adults living with primary immunodeficiency, there will be periods of both joy and stress. It’s important to build your resilience and find healthy ways to cope with challenges. This session will help you make the most of the good times and keep your perspective when times are tough.

Donna Marie Meszaros, PhD Abaris Behavioral Health and Apex Behavioral Health Western Wayne

Key 6

Insight Into Immunological Testing

Laboratory studies are essential to evaluate the immune system to determine the presence of PI. Gain knowledge on basic approaches in the lab, categories of tests, and how to better understand the tests and their results.


Holiday 4-6


Managing Gastrointestinal Complications (repeat)

Discover different ways to monitor, diagnose, and treat G.I. issues, conditions that trouble many patients with primary immunodeficiencies, in this valuable session.

Peter Mannon, MD, MPH The University of Alabama at Birmingham

Key 1-2

Dealing with Lung Disease

According to a 2008 IDF patient survey, nearly two out of five patients with a primary immunodeficiency reported permanent impairment of lung function prior to diagnosis. Discover ways to help relieve the symptoms and prevent complications.


Holiday 4-6

School Issues

Learn how to build a strong relationship with your child’s school and get the best possible education for your child. Understand your school’s responsibility under federal law and your child’s rights.

Maggi Dodds, BSN, MSN, CPNP Texas Children’s Hospital

Katherine Antilla, MAEd IDF Vice President Education & Volunteers

Key 3-4



June 27-29

BACK TO BALTIM RE!




Health Insurance and You (repeat)

Learn the art and language of health insurance to better communicate with private health insurance companies through strategies that will lead to an improved relationship and prevent claim denials. Gain greater understanding of how to work with your insurance company and learn the steps necessary to undertake the appeal/grievance process.


Nichole Clark IDF Patient Advocate Manager

Tubman A-B

Can I Really Ask that Question? Getting the Answers You Need for Today’s World (repeat)

This session is designed to cover the issues for people with primary immunodeficiencies that are often left unspoken. Is it okay to get a tattoo? How about Botox? Are there some forms of contraception I should avoid? No question is off limits. This session is intended for adults only.

William Blouin, MSN, ARNP, CPNP Miami Children’s Hospital

Francisco Bonilla, MD, PhD Boston Children’s Hospital

Carla Duff, CPNP, MSN, CCRP University of South Florida


Holiday 1-3

Employment Issues

Learn about your rights in the workplace. Gain knowledge about the Family & Medical Leave Act (FMLA), the Americans with Disabilities Act (ADA) and discuss disclosure issues.

David W. Knight Department of Justice

Key 6

SATU

RD

AY


June 27-29

BACK TO BALTIM RE!



4:00 pm – 5:00 pm Making Connections Person-to-Person There is no problem if you did not attend the session on Thursday; you are welcome and encouraged to attend.

Please attend for the group that best describes you:

Adult Patients (50 years and up)

Holiday 4-6

Adult Patients (30-49 years)

Key 6

Young Adult Patients (19-29 years)

Tubman A-B

Parents of Children (birth-10 years)

Key 1-2

Parents of Youth (11-15 years)

Holiday 1-3

Parents of Teens and Young Adults (16 years and up)

Key 3-4

Partners of Patients

Carroll A

6:30 pm – 10:00 pm IDF Night at the National Aquarium

The entire family will make long-lasting memories at one of Baltimore’s most popular attractions, the National Aquarium. Saturday evening will begin with a barbeque dinner overlooking the dazzling Inner Harbor. Then, IDF will have the entire aquarium to ourselves where you and your family can discover aquatic treasures to your heart’s delight while enjoying dessert at the conclusion of the conference. Transportation will be provided or you can take the short walk to the aquarium. Buses to begin boarding at 6:00 pm

Please note that strollers are not permitted in the Aquarium. They do have a limited number of frontal or back packs, but if you have your own snuggli or back pack it is advisable to bring that along for your child



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June 27-29

BACK TO BALTIM RE!


SATURDAY 9:00 AM – 5:00 PM(Pre-registration is required)

The Clinical Immunology Society (CIS) and the Immune Deficiency Foundation (IDF) invite you to attend the Update in Diagnosis and Management of Primary Immunodeficiency Disease.

GOALSTo increase early diagnosis and proper treatment of patients with primary immunodeficiency diseases, physicians need to be educated about the recognition and disease management of primary immunodeficiencies. Immunologists, allergists and others who treat primary immunodeficiency diseases need to be updated on matters that will lead to earlier diagnosis and appropriate treatment modalities. Nurses who care for patients with primary immunodeficiency diseases or administer immunoglobulin replacement treatment need continuing education in order to improve the quality of care they provide. In addition, since individuals are most likely to first contact their primary care providers with symptoms, these physicians especially need information about how to meet their patients’ needs with proper diagnosis, treatments and referrals.

TARGET AUDIENCE This program is designed for immunologists, allergists, nursing professionals specializing in immunology and other professionals who treat primary immunodeficiency disease. Primary care physicians, including family practitioners and pediatricians will benefit from the program and are encouraged to attend.

TOPICS TO BE COVERED INCLUDE:• Immune System Basics for Primary Immunodeficiency Disease

• Clinical Presentations and Lab tests to run for diagnosing PI

• Therapies: Treatment of PI through Bone Marrow Transplantation, Immune Globulin Replacement and Gene Therapy

• Case studies for PI

• Co-managing PI Patients and Questions & Answers

Professional Medical Education Program

UPDATE IN DIAGNOSIS AND MANAGEMENT OF PRIMARY IMMUNODEFICIENCY DISEASE

LEARNING OBJECTIVES• Describe the epidemiology of

primary immunodeficiency diseases and recognize the ways in which patients present clinically;

• Identify the laboratory approaches to assess humoral, cellular, and innate immune function and recognize the current limitations of laboratory testing;

• Explain that primary immunodeficiency can present with a wide variety of symptoms (infections, autoimmune/inflammatory disorders and part of a syndrome complex);

• Recognize that Common Variable Immune Deficiency can present at any age and often does later in life;

• Report the various sources of stem cells that can be used for immune reconstitution of patients with primary immunodeficiency diseases as well as differentiate between the advantages and disadvantages of the various types of stem cell transplantation in various primary immunodeficiency diseases;

• Define the various routes for the administration of immunoglobulin including IVIG and SCIG;

• Identify and treat adverse reactions, categorize the new safety measures and develop an IVIG or SCIG management plan.

Sponsored by the Immune Deficiency Foundation (IDF) and the Clinical Immunology Society (CIS)

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http://primaryimmune.org


June 27-29

BACK TO BALTIM RE!


SATUR

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ACCREDITATION STATEMENTThis activity has been planned and implemented in accordance with the Essential Areas and Policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint-sponsorship of the Clinical Immunology Society (CIS) and Immune Deficiency Foundation (IDF). The CIS is accredited by the ACCME to provide continuing medical education for physicians.

DESIGNATION STATEMENTThe Clinical Immunology Society (CIS) designates this live activity for a maximum of 6.5 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Pre-registration is requested, but walk-ins will be accepted on a first-come, first-served basis. Please understand telephone registrations cannot be accepted.

LOCATIONHilton Baltimore Room: Paca-3rd Floor

Professional Medical Education Program

Vaccine Responses and the Diagnosis of PI9:00 am – 9:30 am

Francisco A. Bonilla, MD, PhDChildren’s Hospital Boston

Opportunistic Infections: When to Think of PI9:30 am – 10:00 am

Sergio D. Rosenzweig, MD, PhDNational Institute of Allergy and Infectious Diseases – NIH

Antibody Immunoglobulin Replacement Therapy10:00 am – 10:30 am

Mark Ballow, MDUniversity of South Florida

AM Break10:30 am – 10:45 am

THI and Hypogammaglobuliemia10:45 am – 11:15 am

Kathleen E. Sullivan, MD, PhDChildren’s Hospital of Philadelphia

Interactive Cases11:15 am – 12:45 pm

Moderators: Steven M. Holland, MDNational Institute of Allergy and Infectious Diseases – NIH

M. Elizabeth Younger, CPNP, PhDJohns Hopkins Hospital

Lunch12:45 pm – 1:45 pm

CVID: What It Is and What It Isn’t1:45 pm – 2:15 pm

Charlotte Cunningham-Rundles, MD, PhDMt. Sinai Medical Center

Labs: When to Go Flow, When to Go Genes2:15 pm – 2:45 pm

Thomas A. Fleisher, MDNational Institute of Allergy and Infectious Diseases – NIH

Update on Gene Therapy2:45 pm – 3:15 pm

Fabio Candotti, MDNational Human Genome Research Institute - NIH

PM Break3:15 pm – 3:30 pm

Rational Use of Antibiotic Prophylaxis for Recurrent Infections3:30 pm – 4:00 pm

Alexandra F. Freeman, MDNational Institute of Allergy and Infectious Diseases – NIH

Interactive Cases4:00 pm – 5:00 pm

Moderators: Steven M. Holland, MDNational Institute of Allergy and Infectious Diseases – NIH

M. Elizabeth Younger, CPNP, PhDJohns Hopkins Hospital

PRELIMINARY PROGRAM AGENDA AND SPEAKERS


June 27-29

BACK TO BALTIM RE!


Hotel Floor Plan

Baltimore

FIRST FLOOR EAST BUILDING

Baltimore

SECOND FLOOR


June 27-29

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Notes

Hotel Floor Plan

Baltimore

THIRD FLOOR


June 27-29

BACK TO BALTIM RE!


Notes


June 27-29

BACK TO BALTIM RE!

www.idfnationalconference.org

Mission StatementFounded in 1980, the Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.

IDF BOARD OF TRUSTEESJohn Seymour, PhD, LMFT, ChairBarbara BallardDouglas BellJohn Boyle, PhDMarcia BoyleJoel BuckbergRebecca Buckley, MDCarol Ann DemaretSteve Fietek, SecretaryTerry HalperMary HurleyChuck LageRichard LowRobert LeBien, Vice ChairJohn SmithAmy Walsh

MEDICAL ADVISORY COMMITTEERebecca Buckley, MD - ChairZuhair Ballas, MDMark Ballow, MD R. Michael Blaese, MDFrancisco Bonilla, MD, PhDMary Ellen Conley, MDCharlotte Cunningham-Rundles, MD, PhDAlexandra Filipovich, MDThomas Fleisher, MDRamsay Fuleihan, MDErwin Gelfand, MDVivian Hernandez-Trujillo, MDSteven Holland, MDRichard Hong, MDHoward Lederman, MDHarry Malech, MDStephen Miles, MDLuigi Notarangelo, MDHans Ochs, MDJordan Orange, MD, PhDJennifer Puck, MDJohn Routes, MDWilliam Shearer, MD, PhDE. Richard Stiehm, MDKathleen Sullivan, MD, PhDTroy Torgerson, MD, PhDJerry Winkelstein, MD

NURSE ADVISORY COMMITTEEKristin Epland, FNP-C, ChairLoris Aro, RNWilliam Blouin, MSN, ARNP, CPNPMaggi Dodds, RN, MS, CPNPCarla Duff, CPNP, MSN, CCRPAmy Meyer, RN, CPNP-PCTerry Raburn, RN, BSN, ACRNJeanette Scott, BSN, RNDebra Sedlak, CPNPGretchen Vaughn, RN, MSN, CPNPBeth Younger, CPNP, PhD

IDF STAFFMarcia Boyle, President & FounderDan AntillaKathy AntillaChristine BelserKim BiscoeJohn G. BoyleSusan BuhiteNichole ClarkOnika DavisLaQuay FlemingAdam FreestoneJazmin RuizDiana GillChuck HillEmily HovermaleLarry LaMotteKira LanierKara MoranJulie NzambiSarah RoseChristopher ScalchunesColin SealTiffany SweetwineErin Welsh

IDF-

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-329

JOIN US FOR THE IDF 2015 NATIONAL

CONFERENCE

JUNE 25-27

LOCATION TO BE ANNOUNCED ON FRIDAY NIGHT!

40 W. Chesapeake Avenue Suite 308

Towson, MD 21204

www.primaryimmune.org

800.296.4433

back to baltim re! immune deficiency foundation back …...and, you won’t want to miss the fun!...

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