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Yann Le Cam of EURORDIS becomes Special Advisor to the BioPontis Alliance for Rare Diseases | BioPontis Alliance

Yann Le Cam of EURORDIS becomes Special Advisor to the BioPontis Alliance for Rare Diseases | BioPontis Alliance

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Yann Le Cam nombrado Consejero especial de la Alianza Biopontis para las Enfermedades Raras

Yann Le Cam of EURORDIS becomes Special Advisor to the BioPontis Alliance for Rare Diseases

Raleigh North Carolina, USA and Brussels, Belgium – December 17th, 2014. The Board of Directors at the BioPontis Alliance for Rare Diseases is pleased to announce the appointment of Yann Le Cam, Chief Executive Officer of EURORDIS, as Special Adviser. The appointment of Yann Le Cam as a volunteer senior advisor to BioPontis is part of a broader collaboration between EURORDIS (The European Organisation for Rare Diseases) and BioPontis Alliance, to help build bridges with patient groups and other stakeholders who share a mission to advance more therapy development for rare diseases.
Erik Tambuyzer Ph.D., Board Chair for BioPontis Alliance, states “We are very honored that Yann, as one of the world’s most respected leaders and advocates for patients with rare diseases, will support our initiative. As a founder and past Chair of the European industry Task Force on Rare Diseases and Orphan Medicines, I worked together with Yann and with Eurordis towards the approval and implementation of the EU orphan medicinal products regulation. Yann brings high level strategic guidance to the launch and mission of BioPontis. We look forward to a strong collaboration with EURORDIS and its research-driven member patients’ organizations. Partnerships between patients’ organizations, their philanthropic support, and the biopharmaceutical industry are crucial for bringing treatments to the 95% of rare disease patients currently without treatment options.”
Yann Le Cam served as Vice Chairman of the Committee for Orphan Medicinal Products (COMP) at the European Drug Agency (EMA). As one of its first patient representative members, and working with the European Commission, he was instrumental in helping to design and in advocating many of the strategic initiatives related to rare diseases in Europe and internationally. Yann also served on the Management Board and Executive Committee of the French Health Technology Assessment agency and on the DIA Advisory Committee Europe. He was Vice Chairman of the EU Committee of Experts on Rare Diseases (EUCERD), and is nominated to the current European Commission Experts Group on Rare Diseases. Yann Le Cam is elected Chair of the Therapies Scientific Committee of the IRDiRC – the International Rare Diseases Research Consortium (www.irdirc.org).
“I have had the pleasure of working with Yann Le Cam over many years in a common effort to globalize orphan drug regulations. His outstanding leadership in the community of rare disease patients, coupled with his involvement in supporting rare disease research and international regulatory systems, make him an ideal advisor to our board and management” echoed Marlene Haffner M.D., MPH. and Vice Chair of the Board. Dr. Haffner was Director of the Office of Orphan Drug Product Development at FDA for 22 years.
Yann Le Cam stated “The unique approach taken by BioPontis Alliance is a welcome opportunity for patients’ organizations. They can partner in advancing research toward possible treatments with a fellow not-for-profit organization – yet one that brings the critical expertise to develop therapies and in regulatory planning, and in line with the standards needed by of the biopharmaceutical industry.” He further commented, “The benefit of collaboration between the nonprofit BioPontis Alliance for Rare Diseases with patients’ organizations is that along with BioPontis Alliance’s competencies and abilities to manage drug and intellectual property development, BioPontis is a not- for- profit with a structure to harness financial resources from both philanthropy and the for profit private sector, adding to the strengths of the patients’ organizations and their academic partners. This will form a novel and powerful development machine, hitherto non-existent in the field.”

About BioPontis Alliance for Rare Disease
BioPontis Alliance for Rare Diseases, based in North Carolina, USA and being founded in Europe, is an international nonprofit organization whose mission is to advance promising science into treatment candidates, by partnering with patients’ organizations, academic researchers and industry – for the millions of rare disease patients who await a first attempt at treatment. More information on BioPontis Alliance for Rare Diseases is available at www.biopontisalliance.org.
EURORDIS is a leading International Non-Governmental Organization (INGO) and is recognized as the largest European Patients’ Organization in the field of rare diseases. EURORDIS represents more than 600 rare disease organizations in 60 different countries, covering more than 4,000 distinct rare diseases and is the voice of an estimated 30 million patients affected by rare diseases throughout Europe. More information on EURORDIS is available at www.eurordis.org.

Barbara Handelin, PhD, CEO
BioPontis Alliance for Rare Diseases
(+1) 610 636 2332
In Europe:
Erik Tambuyzer, PhD, Chairperson BioPontis Alliance for Rare Diseases
+32 475 61 57 11

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