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

This important fundraising event for the rare disease community will take place on 21 February 2017 at the Hotel Le Plaza in Brussels, Belgium.

Every year this event brings together over 200 people from across the world, including public officials, patient advocates, clinicians, biotech and pharmaceutical executives, rare disease researchers, media, celebrities and philanthropists.

 

What is the Black Pearl Evening?

Terkel Andersen, President of EURORDIS-Rare Diseases Europe

 

What is EURORDIS-Rare Diseases Europe?

EURORDIS-Rare Diseases Europe 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.

More info on the EURORDIS website:   www.eurordis.org

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