IPOPI attends Rare Diseases Gala Dinner
February 29th marked the celebration of 5th Rare Diseases Day. Launched in 2008 and held every year on the last day of February (‘a rare day for rare people’), the event has grown rapidly and successfully over the years.
This year for the first time, Eurordis, the European Organisation for Rare Diseases, organised a ‘Black Pearl’ Gala Dinner event in Brussels which was attended by approximately 200 participants. IPOPI’s Executive Director, Johan Prevot, was privileged to be invited to represent the PID patient community at this important event as well as PLUS, the Platform of Plasma Protein Users, along with Brian O’Mahony from the European Haemophilia Consortium.
Several prestigious guests attended the event whose honorary chairman was Herman Van Rompuy, President of the European Council. A number of awards for excellence and leading work in the field of rare diseases were also handed in various categories.
The award ceremony was a proud moment for the Primary Immunodeficiency Community as Professor Alain Fischer (France – Hôpital Necker Enfants Malades) and Professor Maria Grazia Roncarolo (Italy – San Raffaele Telethon Institute for Gene Therapy) were honoured to receive the Scientific Award. The award recognized the “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 Immunodeficiencies, 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”. Also to be noted, CSL Behring was among the three winners of the Company Award which Dennis Jackman accepted on behalf of the company. The award recognised “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”. Last but not least, Androulla Vassiliou, who had actively supported the work of PLUS during her term as Health Commissioner was awarded the Policymaker Leadership award.
Overall the event was very successful and promised to become a valuable campaign tool in the European Rare Diseases field.
Registration No. 1058005