EURORDIS Awards 2015 for Excellence in the Field of Rare DiseasesMarch 2015
The 2015 EURORDIS Awards for excellence in the field of rare diseases were presented last week in Brussels. The awards recognise outstanding patient advocacy groups, volunteers, scientists, companies, media and policy makers who have contributed to reducing the impact of rare diseases on people’s lives.
HRH Princess Astrid of Belgium was present for the awards ceremony, as was Rare Disease Day Ambassador Sean Hepburn Ferrer, the eldest son of the late Audrey Hepburn, who passed away from a rare cancer.
Yann Le Cam, Chief Executive Officer of EURORDIS, commented, “Rare Disease Day 2015 recognises the millions of families, friends and carers whose daily lives are impacted by rare diseases and who are living day-by-day, hand-in-hand with people living with a rare disease. We are honoured to have awarded this year’s winners in recognition of the work they do as patient groups, researchers, rare disease patient advocates, volunteers and leaders to support anyone who is affected by or living with a rare disease.” Photos of the award winners are available on the EURORDIS Flickr page.
Lifetime Achievement Award
Ms Abbey Meyers is an outstanding rare disease patient advocate. Ms Meyers was drawn into the world of political advocacy, fundraising and organisation development when it became painfully apparent through her experience as the mother of a child with Tourette syndrome that patients with rare diseases were being neglected in favour of more common diseases that affected larger patient populations. Ms Meyers founded the National Organization for Rare Disorders (NORD) in the USA.
European Rare Disease Leadership Award
Professor Josep Torrent-Farnell is Professor of Clinical Pharmacology and Therapeutics at the Autonomous University of Barcelona and a strong advocate for the patient voice. He became the first Chair of the Committee for Orphan Medicinal Products (COMP) at the European Medicines Agency and with his Vice-Chair, Yann Le Cam, introduced many aspects of patient involvement in the EMA that remain today.
Policy Maker Award
Mrs Glenis Willmott is Labour Member of the European Parliament for the East Midlands (UK) and has demonstrated outstanding dedication and commitment in addressing the needs of patients in the European Union. She played an instrumental role in the passing of key legislation through her work as Rapporteur for the Regulation on Clinical Trials on medicinal products for human use and as Shadow Rapporteur for the regulation establishing the Health for Growth Programme.
Ms Rosa Sánchez de Vega is a dedicated rare disease patient advocate, Co-founder of the Spanish Alliance for Rare Diseases (FEDER) and President of the European Federation of Aniridia. As a rare disease patient herself, and the mother of a son with the same condition, Rosa Sánchez de Vega has successfully managed to channel her difficulties with Aniridia into a positive force for change.
Mr Peter O’Donnell is a prominent writer and editor in the rare disease field currently working as Associate Editor of European Voice. He has worked as an editor and speechwriter for numerous clients in the corporate, political and academic world and has frequently chaired EU-level policy debates on EU affairs. This has made him very well placed to be able to write and report forthrightly on the various complicated issues surrounding rare diseases.
Patient Organisation Award
Children with SMA is a non-profit foundation which has undertaken the incredibly difficult mission of supporting those affected by, or involved with, Spinal Muscular Atrophy (SMA) in Ukraine.
Professor Kate Bushby is a Professor of Neuromuscular Genetics. Her commitment to research in rare diseases has been demonstrated through her impressive publication list, clinical activities and involvement in policy actions. She has played a leading role in the European and national rare disease policy area, acting as vice Chair on the European Union Committee of Experts on Rare Diseases from 2010 to 2013 and still acts in the capacity of invited expert on the new Commission Expert Group on Rare Diseases.
Pfizer’s Rare Disease Research Unit is dedicated to developing new medicines across the spectrum of rare diseases. Pfizer has demonstrated commitment to, and passion for, the rare disease cause with 22 approved products to treat rare diseases worldwide including 4 in Europe.
Full details of each awardee are available here.
Eva Bearryman, Junior Communications Manager, EURORDIS