The European Organisation for Rare Diseases (EURORDIS) is delighted to announce its first fundraising Gala Dinner to be held in Brussels, Belgium: capital city of the European Union. This event will be launched on Rare Disease Day: 29 February 2012 at the Hotel Le Plaza – Brussels. The net proceeds collected from the Gala will support community building initiatives for rare disease patients and families in Europe, help to raise public awareness about rare diseases and stimulate research by assisting patients to launch or get involved in research projects.
Click here to find out more about The Use of Collected Funds.
What is a rare disease?
EURORDIS - The European Organisation for Rare Diseases
EURORDIS is a leading International Non-Governmental Organisation (INGO) and is recognised as the largest European Patient Organisation in the field of rare diseases. EURORDIS represents 479 rare disease organisations in 45 different countries, covering more than 4,000 distinct rare diseases. EURORDIS is the voice of an estimated 30 million patients affected by rare diseases throughout Europe.
Since its inception in 1997, EURORDIS has contributed substantially to the promotion and maintenance of rare diseases as an EU public health and research priority. Key achievements include the contribution to the adoption of the EU Regulation on Orphan Medicinal Products in 1999, the designation of more than 800 orphan drugs, and the adoption of the Commission Communication and Council Recommendation on European Actions for Rare Diseases. Today, EURORDIS is advocating for the implementation of National Plans for Rare Diseases in all EU member states and Europe at large. EURORDIS patient representatives participate in the EU Committee of Experts on Rare Diseases, the most important advisory body in the field of rare diseases in Europe, and 3 scientific committees of the European Medicines Agency (EMA) for advanced therapies, paediatric use of medicines and orphan drugs. Over 800 patient advocates participate in EURORDIS activities every year.
More information is available on the EURORDIS website: www.eurordis.org