The 2013 EURORDIS Awards recognise excellence in the rare disease community
On 26 February, members of the rare disease community were awarded for their outstanding efforts toward improving the situation for people living with rare diseases. Stakeholders from different areas of the rare disease community – including patient organisations, policymaking, science, volunteers, media, and the biopharmaceutical industry – were recognised for their valuable contributions. Recipients of this year’s awards were selected from over 100 nominations submitted by EURORDIS member organisations, volunteers, and staff.
There were ten EURORDIS Awards distributed this year. German Former First Lady Eva Luise Köhler received a Lifetime Achievement Award in honour of her long record of dedication and commitment toward addressing the needs of people living with a rare disease. Member of European Parliament Françoise Grossetête was given the Policy Maker Award for her interventions in favour of legislations benefiting rare disease patients. Dr Ruxandra Draghia-Akli received the European Rare Disease Leadership Award for her accomplishments as Director for Health Research at the European Commission and her leadership on behalf of the International Rare Diseases Research Consortium (IRDiRC), for which she currently serves as Chairperson. Dr Ségolène Aymé received the Scientific Award for overall scientific excellence and for the creation and development of Orphanet, the leading reference portal for expert validated rare disease and orphan drug information. The award also recognises her roles as Chairperson of the European Committee of Experts on Rare Diseases (EUCERD), Scientific Secretariat of the IRDiRC, and Chair of the Topical Advisory Group for Rare Diseases revising the International Classification of Diseases at the World Health Organization. The Media Award went to Andrew Jack of the Financial Times for his contribution to improving understanding and awareness of issues relating to rare diseases.
Three Company Awards were bestowed this year: Celgene Corporation was recognised for its established track record in the area of orphan diseases. Celgene has several orphan designations and approved medicines addressing rare disease patient needs in addition to a robust pipeline of products under development. Prosensa was awarded in recognition of its innovation and promise and for its engagement with patient groups; and Genzyme, a Sanofi Company, was awarded for the pioneering achievements and initiatives undertaken to ensure patient access to rare disease medicinal products.
The EURORDIS Patient Organisation Award was taken home by Alström Syndrome UK for outstanding achievements, long-term commitment and participation in EU projects and initiatives. Finally, Lesley Greene received the Volunteer Award for her outstanding and continuing dedication on behalf of the rare disease community. EURORDIS congratulates all of this year’s winners and thanks each recipient for their contributions on behalf of people living with a rare disease.
| 2013 EURORDIS Awards |
The use of the net proceeds collected from the EURORDIS Black Pearl Gala Dinner 2012 are illustrated below:
Author: Louise Taylor, Communications and Development Writer, EURORDIS