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NORD CORPORATE COUNCIL MEETING 15 May 2012 Washington D.C. USA
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  1. www.eurordis.org NORD CORPORATE COUNCIL MEETING 15 May 2012 Washington D.C. USA Yann LE CAM Chief Executive Officer, EURORDIS Peter Saltonstall President & Chief Executive Officer, NORD

  2. www.eurordis.org NORD & EURORDIS AN INTERNATIONAL COLLABORATION

  3. 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

  4. WHY SHOULD NORD & EURORDIS COLLABORATE? NORD CORPORATE COUNCIL 15 MAY 2012

  5. 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 NORD CORPORATE COUNCIL 15 MAY 2012

  6. 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 NORD CORPORATE COUNCIL 15 MAY 2012

  7. 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 NORD CORPORATE COUNCIL 15 MAY 2012

  8. RARE DISEASE DAY

  9. Rare Disease Day • International awarenessraisingcampaign • Last day of February – the « rare » day • Created by EURORDIS in 2008 withits national alliances on rare diseases • Worldwide Coordination by Eurordis • Driven by patient advocacy groups • To strenghten and expand the rare diseasecommunities • To reach out to policymakers, media and the public • NORD coordinates in the USA • CORD coordinates in Canada • Etc NORD CORPORATE COUNCIL 15 MAY 2012

  10. 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”

  11. Rare DiseaseDay: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.

  12. Rare Disease Day Video! • 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 bonofromleading International PR company

  13. 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

  14. 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

  15. Some examples… France Event in Croatia Medical students in Mexico Military in Portugal Parliament in Ireland

  16. 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

  17. 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

  18. NORD Corporate Council • & • EURORDIS Round Table of Companies

  19. EURORDIS Round Table of Companies • 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 NORD CORPORATE COUNCIL 15 MAY 2012

  20. 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” NORD CORPORATE COUNCIL 15 MAY 2012

  21. THE EURORDIS ROUND TABLE OF COMPANIES • 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” NORD CORPORATE COUNCIL 15 MAY 2012

  22. THE EURORDIS ROUND TABLE OF COMPANIES • 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 CORPORATE COUNCIL 15 MAY 2012

  23. NORD GALA TRIBUTE BANQUET • & • EURORDIS GALA DINNER

  24. EURORDIS GALA DINNERSolidarity & Hope for Rare Disease Patients Throughout Europe NORD CORPORATE COUNCIL 15 MAY 2012

  25. EURORDIS GALA DINNERSolidarity & Hope for Rare Disease Patients Throughout Europe The magnificent « THEATRE ROOM » of the Royal Family PLAZA HOTEL NORD CORPORATE COUNCIL 15 MAY 2012

  26. EURORDIS GALA DINNERSolidarity & Hope for Rare Disease Patients Throughout Europe 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 NORD CORPORATE COUNCIL 15 MAY 2012

  27. EURORDIS GALA DINNER CONCEPT EURORDIS GALA DINNERSolidarity & Hope for Rare Disease Patients Throughout Europe 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) NORD CORPORATE COUNCIL 15 MAY 2012

  28. EURORDIS GALA DINNER • 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 NORD CORPORATE COUNCIL 15 MAY 2012

  29. EURORDIS GALA DINNER NORD CORPORATE COUNCIL 15 MAY 2012

  30. EURORDIS GALA DINNER NORD CORPORATE COUNCIL 15 MAY 2012

  31. EURORDIS GALA DINNER FUNDING 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, EveryLifeFoundation for Rare Diseases • 26 000: Sigma Tau • 20 000: Alexion, Celgene • 15 000 – 16 000: Idis, Medunik Canada • 10 000 – 11 000: Genzyme, BiogenIdec, BioMarin, CLOVIS Oncology, Ernst & Young, Helsinn, Intermune, LFB Biomédiament, OrphanEurope • 7 500: Amgen, Krueger & Assoc., Lysogene, SOBI • 3 000 – 5 000: Amicus, Ariad, Enobia, Laboratoire CTRS, MerckSerono, Orfagen, Pfizer, PTC Therapeutics, Synageva • 500 – 2 700: Antigone, CystinosisFoundation, Dompé, EuropaBio, Lucane, Medtronic, Novartis, Prosensa, Raptor, Voisin Consulting EURORDIS GALA DINNER

  32. Conferences on Rare Diseases • and • Orphan Products

  33. 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 NORD CORPORATE COUNCIL 15 MAY 2012

  34. 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 NORD CORPORATE COUNCIL 15 MAY 2012

  35. 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 NORD CORPORATE COUNCIL 15 MAY 2012

  36. 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 NORD CORPORATE COUNCIL 15 MAY 2012

  37. TRANSATLANTIC FORUM on Rare Diseases & Orphan Products 2013 EURORDIS GALA DINNER EURORDIS GALA DINNERSolidarity & Hope for Rare Disease Patients Throughout Europe • Croatia: Dubrovnik • 30 – 31 May: Transatlantic Forum on Rare Diseases & Orphanproducts • 1 June : EURORDIS Membership Meeting • Organised by: EURORDIS – NORD – CORD • Co-organised by: DIA • Partners (tbc): EUCERD, EMA, NIH, FDA, Orphanet, EFPIA, EuropaBio, Pharmaceutical ResearchManufacturers of America (PhRMA), BiopharmaceuticalIndustryOrganization (BIO) • Associates (tbc): ICORD (?), World HealthOrganization (WHO), Council of Europe and the Organisation for EconomicCooperation and Development (OECD) NORD CORPORATE COUNCIL 15 MAY 2012

  38. EURORDIS GALA DINNER EURORDIS GALA DINNERSolidarity & Hope for Rare Disease Patients Throughout Europe TRANSATLANTIC FORUM on Rare Diseases & Orphan Products 2013 • 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. NORD CORPORATE COUNCIL 15 MAY 2012

  39. EURORDIS GALA DINNER EURORDIS GALA DINNERSolidarity & Hope for Rare Disease Patients Throughout Europe TRANSATLANTIC FORUM 2013 on Rare Diseases & Orphan Products • 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 NORD CORPORATE COUNCIL 15 MAY 2012

  40. RareConnect

  41. Rare Disease Communities:Rebranding by mid 2012 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

  42. RareConnect: 21 Communities live

  43. RareConnect: Strategic Plan • 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 completed • Design for rebranding completed • Budget being revised (ongo)

  44. NORD-EURORDIS • New collaboration on • Patient Registries