nord corporate council meeting 15 may 2012 washington d.c. usa yann le cam chief executive officer,...

NORD CORPORATE COUNCIL MEETING15 May 2012

Washington D.C. USA

Yann LE CAMChief Executive Officer, EURORDIS

Peter SaltonstallPresident & Chief Executive Officer, NORD

www.eurordis.org

NORD & EURORDIS

AN INTERNATIONAL COLLABORATION

www.eurordis.org

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A LONG-TERM STRATEGIC PARTNERSHIP

ON THE 4th OF JULY 2009

EURORDIS AND NORD SIGNED

A MEMORANDUM OF UNDERSTANDING

TO SEAL THEIR

LONG TERM PARTNERSHIP

BASED ON THEIR

RESPECTIVE STRATEGIES 2010-2015

NORD CORPORATE COUNCIL 15 MAY 2012

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WHY SHOULD NORD & EURORDIS COLLABORATE?


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TO PROVIDE A GLOBAL APPROACH TO RARE DISEASES AND ORPHAN DRUGS THROUGH:

I. Coordination of our strategies and implementation

II. International Rare Disease Day: the overall objective is to raise international awareness of rare diseases as a public health priority to policy makers, health

care professionals and other stakeholders, and the public at large

III. International policy affairs: Closer collaboration based on frequent exchange of information and close coordination between the US and EU, and close cooperation on issues of international dimensions

IV. Expand the movement of rare diseases at the international level

V. International Patient Advocate Outreach & Mentoring: The two organisations

will develop their ability to reach out and support patient groups, in the USA,

Europe and worldwide


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TO PROVIDE A GLOBAL APPROACH TO RARE DISEASES AND ORPHAN DRUGS THROUGH:

VI. Joint development of our Web Platform: sharing strategy, investments,

technology and skills so as to offer better and global services using the

potential of Web 2.0 Communications and Social Networking

VII. Relationship with pharmaceutical & biotechnology companies:

Bring together more closely the NORD Corporate Council and the

EURORDIS Round Table of Companies

VIII. Fund raising through international high level events: The two

organisations will jointly support the Annual NORD Gala Tribute

Banquet in Washington and an annual EURORDIS Gala Dinner in

Brussels that started in 2012


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WHAT IS ALREADY VISIBLE?

• Rare Disease Day

• NORD Corporate Council & EURORDIS Round Table of Companies• Conferences on Rare Diseases and Orphan Drugs:

• Europe

• USA

• Transatlantic

• NORD Gala Tribute Banquet & EURORDIS Gala Dinner

• Online Social Networks: RareConnect

• NORD-EURORDIS new collaboration on Patient Registries

• Coordination in international policy affairs


RARE DISEASE DAY

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Rare Disease Day

International awareness raising campaign Last day of February – the « rare » day Created by EURORDIS in 2008 with its

national alliances on rare diseases Worldwide Coordination by Eurordis Driven by patient advocacy groups To strenghten and expand the rare

disease communities To reach out to policy makers, media and

the public NORD coordinates in the USA CORD coordinates in Canada Etc


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Rare Disease Day

Five Years of Experience:

2008 : Rare Diseases as a Public Health Priority

“A rare day for special people”

2009 : Patient-centred care

“Patient Care: A Public Affair!”

2010: Bridging Patients and Research

“Patients & Researchers: Partners for Life!’

2011: Rare Diseases and Health Inequalities

“Rare but Equal”

2012: Solidarity with People Living With Rare Diseases

“Rare but Strong Together”

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Rare Disease Day:Participating Countries

18 in 2008

30 in 2009 NORD joined in 2009

46 in 2010

55 in 2011 63 in 2012

25 official partners (Council of National Alliances)

Belgium, Denmark, France, Germany, Greece, Hungary, Ireland, Italy, Netherlands, Romania, Spain, Sweden, UK, Bulgaria, Croatia, Luxembourg, Portugal, Russia, Canada and USA.

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• Over 100,000 views

• Translated into 11 languages

• The video was “liked” on facebook 9,213 times

• Ranked 1st on YouTube in NGO category

• 100% pro bono from leading International PR company

Rare Disease Day Video!

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Video promotion

• Shown on several national and regional TV stations in Italy, Portugal and Ireland

• International Rare Disease Day Website

• NORD’s RDD website

• EU Health Newsletter (on EC’s website)

• OrphaNews Europe

• National Alliances + European Federations + members and hundreds of other websites

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Joining hands @ the world

Thousands of people responded to our call to Raise & Hold hands to show Solidarity with RD patients

•91 photos on rarediseaseday.org

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Some examples…

Medical students in Mexico

Parliament in Ireland

Event in Croatia

Military in Portugal

France

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Rare Disease Day Media Coverage

• Online press clipping –

over 3000 articles during the month

of February

1388 during the week of Feb 29

• CBS News.com

• Le Point

• The Examiner

• Huffington Post

• The Lancet

• Nature

• Gulf News.com

• AztecaNoticias

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Specific Policy Events

• Rare Disease Day Symposium

in Brussels on

“Rare but Strong Together”

• Launch of the Genetic Testing Registry

by the National Institutes of Health in the USA

• All day event at the National Institute of Health

NORD Corporate Council &


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35 US and European companies specialised in orphan drugs and therapies for rare diseases

2 workshops/ year; High level well prepared topics; break-out sessions; several social networking opportunities

70-90 representatives of industry, drug regulatory agencies, patient groups, clinicians and academics


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THE EURORDIS ROUND TABLE OF COMPANIES

• 12th Workshop: 18th June 2010, Barcelona

“Retooling the EU Orphan Drug Regulation and US Orphan Drug Act for Better and Faster Development of Rare Disease Therapies?”

• 13th Workshop: 10th December 2010, Paris

“Patients' Access to OMPs, Innovative Pricing Schemes and National Measures in a Global Financial & Economic Crisis Environment”


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• 14th Workshop: 27 May 2011, Barcelona

“Mechanisms for the Implementation of the Clinical Added-Value of Orphan Drugs (CAVOD) – Common Assessment of Relative Efficacy, & Relative Effectiveness and Post-Marketing European research Plans on Risk-Benefit-Effectiveness ”

• 15th Workshop: 21 November 2011, Paris

“Compassionate Use and Early Access Programmes”


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• 16th Workshop: 1st March 2012, Brussels

"The Value of Partnering in Rare Disease Therapies: Benefits of working with patients along the treatment lifecycle in the areas of clinical trials, regulatory affairs and health technology assessment"

• 17th Workshop: 28th September 2012, Barcelona

"Determining the "Value" of Orphan Drugs"


NORD GALA TRIBUTE BANQUET&

EURORDIS GALA DINNER

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EURORDIS GALA DINNERSolidarity & Hope for Rare Disease Patients Throughout Europe


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The magnificent « THEATRE ROOM »

of the Royal Family PLAZA HOTEL



26 NORD CORPORATE COUNCIL 15 MAY 2012


A very elegant evening

Partners & Patrons Reception, Champaign & Oister Bar,

Afters of champaigns & coffees, gastronomic dinner,

International class Live Music Performance,

Photo & Video Exhibition, EURORDIS Awards

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EURORDIS GALA DINNER CONCEPT

CO-CHAIRS GALA COMMITTEE

Eric Emmanuel Schmitt (Belgium & France)

Milan Macek (Czeck Republic & ESHG)

VICE-CHAIRS

Axel van der Mersch (Luxembourg)

Reem Boustany (Belgium & Lebanon)

MEMBERS

Peter Salstonstall (USA)

Franck Sasinowski (USA)

Elis Kakkis (USA)

Pat Mahaffy (USA)

Mark Kruger (USA)

Bo Jesper Hansen (Sweden)

Fabio Cavalli (Switzerland)

Riccardo Braglia (Switzerland)



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• 250 attendees on-site

• High level politically Strong political message by President of the European Union

Council, Herman Van Rompuy Honorary Patrons included 3 First Ladies + 2 Commissioners + 3

MEPs + 2 Ambassadors In the presence of 1 First Lady, 2 Commissioners, 3 Ambassadors

+ other attendees of public offices President of the Law Bar of Belgium Owners and top executives of corporate sponsors Leaders of scientific community


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42 Organisations contributed, including 39 business, 1 foundation, 1 trade association and 1 patient organisation, from Europe (29), USA (12) and Canada (1) •50 000: Bayer, Shire

•35 000: CSL Behring, GSK, EveryLife Foundation for Rare Diseases

•26 000: Sigma Tau

•20 000: Alexion, Celgene

•15 000 – 16 000: Idis, Medunik Canada

•10 000 – 11 000: Genzyme, Biogen Idec, BioMarin, CLOVIS Oncology, Ernst & Young, Helsinn, Intermune, LFB Biomédiament, Orphan Europe

•7 500: Amgen, Krueger & Assoc., Lysogene, SOBI

•3 000 – 5 000: Amicus, Ariad, Enobia, Laboratoire CTRS, Merck Serono, Orfagen, Pfizer, PTC Therapeutics, Synageva

•500 – 2 700: Antigone, Cystinosis Foundation, Dompé, EuropaBio, Lucane, Medtronic, Novartis,

Prosensa, Raptor, Voisin Consulting

EURORDIS GALA DINNER FUNDING


Conferences on Rare Diseases and

Orphan Products

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The Conferences on Rare Diseases and Orphan Products

• An annual conference:

in the USA in October « US Conference on Rare Diseases and Orphan products »

in EU in May « European Conference on Rare Diseases and Orphan Products »

• A partnership EURORDIS-NORD-DIA

• A common brand, a common format, a coordinated content

• EURORDIS and NORD bring the focus and the transatlantic effect

• The DIA brings know-how, marketing, new audiences

• A format with a balanced mix of policy advocacy, information & experience sharing, capacity building and networking

• Plenary sessions, parallel themes of several sessions, tutorials


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6th European Conference on Rare Diseases and Orphan Products 2012 Brussels

23-24-25 May 2012 in Brussels

Plenary + 600 people

Translation 6 languages in plenary room

(English, French, German, Dutch, Spanish, Russian)

36 additional Sessions

Spacious foyer/lunch/coffee break/poster area


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6th European Conference on Rare Diseases and Orphan Products 2012

• Organised in collaboration with DIA Europe

• Partnership include all key stakeholders: European Commission (EC), EU Committee of Experts on Rare Diseases (EUCERD), European Medicines Agency (EMA) and its scientific committees (COMP, PDCO, CAT, CHMP, PhVg), Industry (European Emerging Biotech of EFPIA and EuropaBio), ORPHANET, NORD

• Themes: “Orphan Products”, “Research Policy”, “Health Policy”, “Social Policy” of 2 to 6 sessions each, covering a broad range of 30 topics : designation, marketing authorisation, clinical added value and effectiveness, early access programmes, market access...to national plans on rare diseases, population screening, diagnostic, registries, health provision services, healthcare pathways, e-health....to rehabilitation services, quality of life, training of healthcare professionals


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6th European Conference on Rare Diseases and Orphan Products 2012

• Tutorials for industry and for academia

• Poster sessions – 160 Selected

• Social Networking such as “Meet the EU regulators, National Competent Authorities and HTA representatives”, “Meet the EUCERD, the EU & national health authorities” etc

• Meeting Points by specific therapeutic area of common interest or international networking etc

• On Day 1: Parallel workshops of European networks (Council of National Alliances, Orphanet, Help Lines, Coordinators of National Plans, etc) + EURORDIS Membership Meeting with sessions of capacity building for patient advocates

• Broad dissemination: website, webcast, e-newsletters, report


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• Croatia: Dubrovnik

• 30 – 31 May: Transatlantic Forum on Rare Diseases & Orphan products

• 1 June : EURORDIS Membership Meeting

• Organised by: EURORDIS – NORD – CORD

• Co-organised by: DIA

• Partners (tbc):

EUCERD, EMA, NIH, FDA, Orphanet, EFPIA, EuropaBio, Pharmaceutical Research Manufacturers of America (PhRMA), Biopharmaceutical Industry Organization (BIO)

• Associates (tbc): ICORD (?), World Health Organization (WHO), Council of Europe and the

Organisation for Economic Cooperation and Development (OECD)


TRANSATLANTIC FORUM on Rare Diseases & Orphan Products 2013


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• 200 – 300 participants

• 1/3 policy-makers, health professionals and academia, 1/3 patients and patients representatives and 1/3 industry representatives

• Content: Forum of exchange to sustain a strategic collaboration between both sides of the Atlantic (the EU and Canada/US) as well as to position Rare Diseases on the international scene. A policy / technical working meeting focused on concrete objectives.


TRANSATLANTIC FORUMon Rare Diseases & Orphan Products 2013


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• Format: 1,5 days comprised of one Plenary session + 10 parallel sessions + an international Video Conference with participants from Washington DC, Ottawa, London and Brussels. Specialised satellite meetings for networks

• English only

• No tutorials

• No posters

• No exhibition


TRANSATLANTIC FORUM 2013 on Rare Diseases & Orphan Products


RareConnect

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Rare Disease Communities:Rebranding by mid 2012

41 • New Name, New Logo, New Graphic Identity

• www.rareconnect.org

• “Join the Global Conversation”

• Presence on eurordis.org & NORD website

• 21 Communities live

• 1544 registered Participants

• 191 partner Patient Organisations from 32 countries

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RareConnect: 21 Communities live

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RareConnect: Strategic Plan

44 EURORDIS and NORD joint strategic plan developed in partnership by staff of both organisations

Includes situation analysis and project components: Marketing strategy Project implementation strategy Technology plan Fundraising Budget Governance

Project planning & narrative report completedDesign for rebranding completedBudget being revised (ongo)

NORD-EURORDIS

New collaboration on

Patient Registries

nord corporate council meeting 15 may 2012 washington d.c. usa yann le cam chief executive officer,...

Documents

nord eurordis

rare day

international rare disease

rare disease day slide

nord corporate council

public nord coordinates

movement of rare diseases

rare disease communities