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Millions in Free Health Care:

Believe It!

National Marfan Foundation Serving the Needs of the Marfan Syndrome and Related Disorders Community

National Health Council, February 2013

• Marfan syndrome is a disorder of connective tissue.

• Marfan syndrome features can occur in multiple body systems.

• Marfan syndrome features are most often found in the heart, blood vessels,

bones, joints, and eyes. Sometimes the lungs and skin are also affected.

• About 1 in 5,000 people have Marfan syndrome. This includes men and

women of all races and ethnic groups.

What is Marfan

Syndrome?

Why Does It Matter?

Why Does it Matter?

• Marfan syndrome is life-threatening.

• If not diagnosed and treated, life expectancy is approximately 37

years and with treatment approximately 74 years.

• People with Marfan syndrome are at a 250x increased risk of aortic

dissection compared to the general population

Our Challenges

• Multi-system disorder requires many specialists for

diagnosis and treatment

• Patients have limited access to clinicians with Marfan

expertise

• Approx. 70% of Coordinated Clinics are in only 7 states

Our Breakthrough We have nearly doubled average life expectancy for our patient

community!

The key is early diagnosis and proper treatment.

Overcoming the Challenges:

Free NMF Conference Clinic

Access to Care: Conference is

hosted by a different hospital in a

different part of the country each

year and is free to patients

Expert Care: The leading Marfan

and related disorders experts from

around the country are flown in

each year to see 100+ patients,

for over 300 appointments, in 2

days



Proper Diagnosis and

Expert Treatment Advice:

Medical tests

(echocardiograms, slit lamp

eye exams) and

appointments with all

necessary specialists

(genetics, cardiac,

orthopedic, pulmonary,

dental) provided on site by

the experts



Training the Next

Generation of Experts:

Each year physicians from

around the country are

invited to observe the

conference clinic, participate

in post clinic case reviews

and learn from the experts



Research Opportunities:

Data collection for genetic,

eye, pulmonary, and

orthopedic studies.

Recruitment opportunity for

clinical studies such as NIH

Clinical Trial and GenTAC

Registry

Marfan Conference Clinic Hosts

1984: Johns Hopkins Hospital,, MD

1986: Johns Hopkins Hospital,, MD

1987: North Shore Univ. Hospital, NY

1988: Johns Hopkins Hospital, MD

1989: Cedars Sinai Medical Center, CA


1991: Univ. of Michigan Medical Ctr, MI


1993: Shriners Hospital, Portland, OR


1995: Washington Univ. Medical Ctr, MO

1996: Methodist /Baylor College, TX

1997: Stanford Univ. Medical Center, CA

1998: NY Hospital-Cornell Med. Ctr., NY

1999: Allegheny General Hospital, PA

2000: University of Nebraska, NE

2001: University of Washington, WA


2003: Loyola Medical Center, IL

2004: Cedars Sinai Medical Center, CA

2005: Washington University, MO

2006: University of Pennsylvania, PA

2007: Stanford University, CA

2008: Boston Children’s Hospital, MA

2009: Mayo Clinic, MN

2010: Baylor College of Medicine/UT, TX

2011: OHSU and Shriners Hospital, OR

2012: Northwestern Medicine, IL

Cultivation of Future Conference

Hosts

• Invite Marfan clinic

directors to observe or

participate in conference

clinic

• Provided with a clear and

concise full conference

manual

• Operational guide for

hosting conference clinic

Powerful Opportunities for

Host Institution

• Cements reputation as a

leader in Marfan care

• Attracts patients to their

facility not only for yearly

management but also for

costly surgical repair

• Provides institution with

the ability to host a CME

with leading experts


Host Institution

• Provides host institution

with the ability to highlight

new and innovative clinic

spaces such as children’s

hospitals

• Provides host institution

the ability to conduct

research activities with

patients in clinic


Host Institution • Provides host institution

with the ability to train in

house residents and

other allied health

professionals by leading

experts in Marfan

syndrome who might

never have the

opportunity to see so

many Marfan patients at

one time

Putting Patients First:

Conference 2012 a Case Study

2012 Conference Clinic Health Evaluations Provided for Free

404 examinations for 120 patients:

• 90 Echocardiograms

• 80 Ocular Exams by 10 doctors

• 52 Genetic Exams by 6 doctors

• 51 Orthopedic Exams by 4 doctors

• 40 Pediatric Cardiology Exams by 5 doctors

• 34 Dental Exams by 2 doctors

• 28 Adult Cardiology Exams by 5 doctors

• 12 Pain Exams by 1 doctor

• 9 Surgical Consults by 3 doctors

• 8 Pulmonary Exams by 2 doctors

Putting Patients First:

Conference 2012 a Case Study

• Total estimated cost of medical tests (echos.,slit lamp eye

exams) provided in kind in 2012 = $335,000

• Estimated foregone revenue to host hospitals: 20-30 exam

rooms used for Conference clinic for 2 full days would typically

be used for billable patients totaling $300,000 in lost hospital

revenue

• 2012 Total = $635,000

• Cost to Conference Patients = FREE

• Convening the nation’s Marfan experts all in one place to

provide diagnostic and treatment care is PRICELESS

A Parent’s Voice

This conference is literally

saving my son’s life.

Dr. Cameron found Ricky had

been misdiagnosed and was a

"walking time bomb” because

of a tear in the descending

aorta.

A Patient’s Voice

The free clinic was irreplaceable.

I can't believe you can offer such a

degree of care.

There is no way I would have been able

to garner a tiny fraction of the

diagnostic information I got in one day

at the clinic.

The level of expertise and the sheer

number of world-renown specialists

presenting conference sessions was

dazzling.

Anyone who was at the top of their

Marfan-related field was not only there

but was accessible

The Conference

The Community

Families attend the NMF’s Annual Conference to

participate in the free clinic and get advice from the

nation’s experts.

Families leave the Annual Conference with lifelong

friendships, increased self esteem and knowing they

are part of a community of families, physicians and a

foundation that will support them for the rest of their

lives

Conference Attendees (Adults)

• 29% Personally have Marfan syndrome

• 45% Parent of a child with Marfan syndrome

• 14% Family member of a person with Marfan

• 4% Personally have a related disorder

• 4% Parent of a child with a related disorder

• 2% Family member of a person with a related

disorder

• 2% Medical Professionals

Conference

• Cutting-edge research

presentations by U.S.

and international

researchers

• Over 50 medical and

psychosocial

workshops led by the

experts

• Tailored programs for

children, teens, and

young adults

Conference • Volunteer leadership

training

• CME course for physicians

• Shared meals and social

time – reunions of friends

and families

• Celebrations of hope and

achievement

• Scholarships for families

who wouldn’t otherwise be

able to get expert medical

or come to the Conference

and meet others like them

Community

Community Voice We are very grateful for the

scholarship that allowed us

to attend. As the

conference was across the

country, our expenses were

going to be high.

What a fabulous opportunity

to hear from doctors from

all over the country, who

are willing to take their time

to share their knowledge,

allowing us to be better

informed patients,

caregivers and advocates.

Community Voice I have never met another

person with Marfan except

for my son.

Being at the conference really

put life into perspective for

me.

We are more eager to take

care of ourselves with the

information we learned.

I made so many new friends.

For once I didn’t feel

awkward or stand out.

For once I fit in. It was an

awesome weekend.

Medical Community Voice

“It was amazing to see

the intimate level of

interaction between

physicians at patients at

the conference. It was

truly an unique

experience that I have

not experienced at any

other conference.” Bjorn Olsen, MD, Harvard University

– NMF Past Scientific Advisory Chair

Medical Community Voice

“Attending the NMF

conference each year

and interacting with the

patients renews my

dedication to research

and pushes my desire

forward to find

therapies.” Hal Dietz, MD, Johns Hopkins

University, Past Medical Advisory

Board Chair

Making It Happen

• Start small with partners who “get it”

• Look for “bright spots”

• Programs, content and activities driven by patient needs - “put patients first”

• Continuously listen and improve

• Pilot + collect feedback + refine & build

• Document and communicate impact

2013 Los Angeles

We invite you to join us and observe!

millions in free health care: believe it! · millions in free health care: believe it! ... •...

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