EURORDIS-Rare Diseases Europe is delighted to announce its 20th anniversary and the sixth edition of the EURORDIS Awards & Black Pearl Evening.

This special edition of our fundraising event will take place on 21 February 2017 at the Hotel Le Plaza in Brussels, Belgium.

The net proceeds collected from the Black Pearl Evening will support community building initiatives to break the isolation of rare disease patients and their families in Europe and empower leaders of the rare disease community through training, capacity-building activities and exchange to stimulate their research and increase public awareness about rare diseases.

 

 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 more than 700 rare disease organisations in 63 different countries, covering more than 6,000 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 1100 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 three scientific committees of the European Medicines Agency (EMA) for advanced therapies, paediatric use of medicines and orphan drugs. Over 1000 patient advocates participate in EURORDIS activities every year.

Please visit the EURORDIS website for more information:   www.eurordis.org

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