April 11, 2013
This year, at the 2nd Annual Black Pearl Gala dinner, organized by EURORDIS in Brussels at the Plaza Hotel, awards for “outstanding accomplishments in the field of rare diseases” were presented to stalwarts in the field of rare disease. These awards were presented on the eve of the 6th Rare Disease Day. All the recipients of the awards have been tireless in their pursuit to obtain rare disease patients the quality care they deserve. This award not only recognizes their efforts but also reiterates future support for their work. From over 100 nominations, the EURORDIS Board of Directors voted on the recipients for this year’s awards. These awards cover the wide range of areas necessary to make a difference for rare disease patients- from individuals who have been relentless in their mission to patient organizations to policy makers and companies.
This year the Lifetime Achievement Award was presented to Former First Lady of Germany, Mrs Eva Luise Kohler, for her lifelong dedication and commitment to “address(ing) the needs of people living with a rare disease”. Following her persistent effort in Germany to create awareness for rare disease, public figures in other European countries have been inspired to follow her footsteps.
This year’s Patient Organization Award went to Alstrom Syndrome UK which was founded by Kay Parkinson-an inspirational figure-who has been instrumental in the development of patient led NHS funded multi-disciplinary clinics for Alström Syndrome. Alström UK has led important initiatives in the field of rare disease in addition to being a partner in the Euro-WABB project, an EU Rare Diseases Registry for Wolfram syndrome, Alström syndrome, Bardet-Biedl syndrome and other rare diabetes syndromes. Eurordis also recognises the critical role media plays in reaching out to the general public about the struggles of rare disease patients and garner their support. This year the Media award went to Andrew Jack of the Financial Times for his contributions towards disseminating knowledge about the challenges faced by rare disease patients.
In the area of policy making, the Policy Maker Award was awarded to Françoise Grossetête and the European Rare Disease Leadership Award was awarded to Dr Ruxandra Draghia-Akli. As Member of the European Parliament, Françoise Grossetête has been highly influential in formulating several policy changes that address the needs of people living with rare diseases including regulations on Advanced Therapy Medicinal Products and the Cross Border Healthcare Directive. The award for European Rare Disease Leadership Award was received by Dr Ruxandra Draghia-Akli the Director for Health Research at the European Commission dedication and commitment in making sure that people living with rare diseases get their day in the sun. Dr Draghia-Akli is currently the chairperson of the International Rare Diseases Research Consortium (IRDiRC).
The Volunteer award was presented to Lesley Greene for her exceptional contributions as a volunteer for various initiatives benefiting the rare disease community. Ms Greene is currently the Vice-Chair of the Committee for Orphan Medicinal Products at the European Medicines Agency and Co-Founder and former Vice President of CLIMB.
EURORDIS awarded the Scientific Award to Orphanet’s very own Dr Ségolène Aymé for her “overall scientific excellence, promotion of European and International collaboration, and support of the patient community via Orphanet, the world’s leading reference portal for expert validated rare disease and orphan drug information”. Although retired from her position as Director of Orphanet, Dr Aymé is as active as before in her commitment towards rare disease stakeholders. She is the Chairperson of the European Committee of Experts on Rare Diseases (EUCERD), Scientific Secretariat of the International Rare Disease Research Consortium (IRDiRC), and Chair of the Topical Advisory Group for Rare Diseases for the revision of the International Classification of Diseases at the World Health Organization and at the helm of activities and initiatives to help the rare disease community.
Genzyme (a Sanofi Company), Prosensa and Celgene were given the company awards for their contributions towards enhanced and innovative drug development for rare disease patients.
The event was also well attended by several important figures in the European community. It was co-chaired by Professor Milan Macek from Charles University in Prague and by Eric Emmanuel Schmitt the well-known dramatists, film director and philosopher. The range of honorary patrons included among many others Herman Van Rompuy, President of the European Council. Proceeds of this dinner will go towards creating greater awareness of rare diseases.