EURORDIS awards excellence in the rare disease community
To honour excellence in the field of rare diseases, EURORDIS awards key players at the Black Pearl Gala every year, as part of Rare Disease Day commemorations. This year the EURORDIS Awards were presented to distinguished individuals and organisations dedicated to the betterment of the rare disease community.
Lifetime Achievement Award
Ms Abbey Meyers
Ms. Meyers is the founding member of the National Organisation of Rare Diseases (NORD) which is celebrating its 32nd year this year. She was forced to start this organisation after the painful diagnosis of her sons Tourette Syndrome. Her activism led to the formation of NORD which plays an active role in advancing the cause of rare disease patients in United States, which has been an inspiration for many patient organisations over the world.
European Rare Disease Leadership Award
Professor Josep Torrent-Farnell
Prof. Torrent-Farnell was presented the leadership award for working as a tireless advocate for the patient voice. As the former Director General of the Fundació Doctor Robert, Advanced Centre of Services and Training for Health and Life Sciences, he was able to introduce a rare disease focus and impact the lives of many in Spain. Prof. Torrent-Farnell joined the newly established European Medicines Agency (EMA) as Principal Scientific Administrator in 1995 and as the first Chair of the Committee for Orphan Medicinal Products (COMP) introduced many aspects of patient involvement in the EMA that are relevant till date.
Policy Maker Award
Mrs Glenis Willmott
As a Labour Member of the European Parliament for the East Midlands and three-time re-elected leader of the European Parliamentary Labour Party, Mrs Willmotts work towards better policy for rare disease patients has been relentless. She played a vital 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 towards establishing the Health for Growth Programme. These two pieces of EU legislation continue to have a tremendous positive impact on the lives of people living with a rare disease in Europe.
Volunteer Award
Ms Rosa Sánchez de Vega
Even though Ms Sánchez de Vega has faced many challenges as a rare disease patient herself, she has channeled all her energy towards helping other rare disease patients. She founded the Spanish Aniridia Association in 1996, going on to co-found the Spanish Alliance for Rare Diseases (FEDER), and is currently serving as President of the European Federation of Aniridia, Aniridia Europe. She is an inspiration to many as she has put her needs second to the needs of the various voiceless rare disease patients and served the community enthusiastically.
Media Award
Mr Peter O'Donnell
Currently working as an Associate Editor of European Voice, Peter O’Donnell is a prominent writer and editor in the rare disease field. He is an influential voice as he provides information to the general public about the trials and tribulations of the rare disease patients. Mr. O’Donnell continues to be active in the rare disease community, demonstrating commitment and passion towards the cause of rare disease patients. Just recently he spoke at the Lunch Debate on Data Protection at the European Parliament.
Patient Organisation Award
Children with SMA accepted by Mr Vitaliy Matyushenko
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. Children with SMA endeavours to promote knowledge around the disease and encouraging dialogue between legislators, researchers and patients. They have also contributed to the adoption of the law for Rare Diseases in Ukraine and the foundation of the National Alliance.
Scientific Award
Professor Kate Bushby
The Scientific Award was presented to Professor Kate Bushby, the founding co-ordinator of the TREAT-NMD Network of Excellence and a key member of several European projects. 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. This award recognises her outstanding achievements in inherited neuromuscular diseases research and her commitment to patients.
Company Award
Pfizer's Rare Disease Research Unit
To recognise the role major pharmaceutical companies play in the development of, and ensuring access to, innovative treatments for rare disease patients, Pfizer has been presented the Company Award. In 2010, Pfizer established its own Rare Disease Research Unit, with the objective of taking an innovative and collaborative approach to the development of new medicines across the spectrum of rare diseases. The current pipeline includes clinical and pre-clinical programmes in several rare diseases. Pfizer has 22 approved products to treat rare diseases worldwide including 4 in Europe.
More information on the EURORDIS website
Photo Courtesy: EURORDIS
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