rddvideo

This is the official video for #RareDiseaseDay 2017! Research: With research, possibilities are limitless!

Rare Disease Day is a patient-led campaign that brings together millions of patients, families, carers, medical professionals, policy makers and members of the public in solidarity – everyone can get involved!

The Rare Disease Day 2017 theme is research and slogan “With research, possibilities are limitless”. Rare disease research is crucial to providing patients with the solutions they need, whether it is a treatment, cure or improved care. The tenth edition of Rare Disease Day will see people from all over the world come together to advocate for more research on rare diseases. 

People living with a rare disease are sometimes unable to find answers and medical solutions they need, often because of a lack of research. To illustrate this frustration, this year’s video draws a parallel with a routine that many of us go through multiple times a day – searching for an answer on the internet. The video highlights how isolating it is when you search on the internet but receive the response ‘your search had no results’.

Share the video to become part of the international campaign!

 

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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