EURORDIS Gala Dinner

The European Organisation for Rare Diseases (EURORDIS) presented the First EURORDIS Awards for excellence and leading work in the field of rare diseases, at its EURORDIS Gala Dinner on Rare Disease Day: 29 February 2012.

The EURORDIS Awards are designed to recognise the outstanding commitment and achievements of patients’ advocacy groups, volunteers, scientists, companies, media and policy makers who have contributed – directly or indirectly – to reducing the impact of rare diseases on people’s lives.

These prestigious awards are judged by the EURORDIS Board of Directors based on over 100 nominations received from EURORDIS members, volunteers and staff, with the aim of promoting leadership and the highest achievements in favour of people living with rare diseases.

The following awards were granted:

PATIENT ORGANISATION AWARD
French Muscular Dystrophy Association (AFM-Telethon)
In recognition of its unmatched support for the cause of rare diseases, rare disease patients’ organisations throughout France and EURORDIS, as well as its outstanding success in increasing awareness, raising funds and widely supporting research.

VOLUNTEER AWARD
Michele Lipucci Di Paola, PhD
In recognition of his unshakable commitment to improving conditions for people affected by rare diseases and particular dedication in Italy and on the European level.

EUROPEAN RARE DISEASE ACHIEVEMENT AWARD
Kerstin Westermark, MD, PhD
In recognition of her expertise, dedication and more than a decade of support to those with rare diseases, as the Swedish delegate and Chairperson of the Committee for Orphan Medicinal Products at the European Medicines Agency in London.

POLICY MAKER AWARD
Androulla Vassiliou, JD
In recognition of her invaluable contribution to the rare disease community as Commissioner for Health and Consumer Policy from February 2008 to end of 2009, when she supported the adoption of the Commission Communication: “Rare Diseases: Europe’s Challenge”, and the Council Recommendation on Rare Diseases which has laid the groundwork to improve conditions for rare disease patients in all Member States of the European Union.

SCIENTIFIC AWARD
Professor Alain Fischer and Professor Maria Grazia Roncarolo
On behalf of the San Raffaele Telethon Institute for Gene Therapy, Italy and the Hôpital Necker – Enfants Malades, France
As an outstanding example of scientific research and European collaboration that has resulted in the successful development of the first gene therapy for rare diseases related to Severe Combined Immuno Deficiencies, which has set the stage for the extension of gene therapy to other genetic diseases with a high unmet medical need and for which there is currently no cure.

MEDIA AWARD
BBC
In recognition of more than three decades of support, raising awareness on rare diseases and covering rare disease issues from a patient’s perspective.

COMPANY AWARDS
CSL Behring
In recognition of the company’s long-standing commitment to treatment of rare disease patients, and most recently for its advances to benefit people living with primary immunodeficiency diseases and secondary immune-deficiencies.

Sigma-Tau Pharmaceuticals
In recognition of being an early leader in developing medicines for rare diseases and for remaining an exemplary partner in the rare disease community.

Shire
In recognition of Shire’s pioneering initiatives, particularly for patients with Hunter Syndrome and Gaucher Disease, and for the company’s ongoing commitment to people living with rare diseases throughout Europe.

The EURORDIS Black Pearl Gala Dinner Honorary Patrons, Award Winners and Committee Members

The first EURORDIS Black Pearl Gala Dinner took place on Rare Disease Day 2012: 29 February at the Hotel Le Plaza in Brussels, Belgium. This first fundraising gala event was a tremendous success!
Two hundred and twenty people – people working in the pharmaceutical field and other industries, Brussels community members, national and international officials, individuals and family members living with a rare disease, and friends who care – joined together on Rare Disease Day to lift up the rare disease cause and raise funds for EURORDIS.

Donors contributed a net total of 311,500 € for EURORDIS’ actions to empower rare disease patients throughout Europe:

•    Support families affected by rare diseases by developing and supporting pioneering community-building initiatives in the form of grants to actions of European Federations, seed money to create patient groups and international patient on-line communities.
•    Raise public awareness about rare diseases by increasing the profile and impact of Rare Disease Day (www.rarediseaseday.org), our international communication campaign taking place each year at the end of February.
•    Build the research and therapeutic development capacity of rare disease communities by providing its leaders with training opportunities and fellowships as well as seed money to initiate European collaborative research activities.

We look forward to reporting back later this year on the allocation of funds and their impact for rare disease patients and their families.

Video welcome message by Hermany van Rompuy, President of the European Council and Honorary Chairman of the first EURORDIS Gala Dinner

Guest performance by Natalia van der Mersch

Gala Committee Co-Chairs: Milan Macek and Eric Emmanuel Schmitt

Gala Committee Vice-Chairs: Reem Boustany and Axel van der Mersch

Photo exhibition portraying the daily lives of patients living with a rare disease in Europe

We are excited to announce that MEP Françoise Grossetête has confirmed her support of the EURORDIS Gala Dinner and will be in attendance at this important event for the rare disease community on 29 February.