News

ENERCA will celebrate the Rare Disease Day With EURORDIS

The Network was invited to the EURORDIS central event to take place in Brussels

February 28th 2012

EURORDIS Rare Disease Day

The whole world is celebrating the Rare Diseases Day (February 29th). Many celebrations and informative events are being held across Europe as you can see at our agenda section. Brussels will hold some important events, such as the “Rare but strong together event” organized by EURORDIS. The purpose of this meeting is to justify the usefulness of EU action in the field of rare diseases and to maintain and push even further Rare Diseases as a top priority of the future based on the added value of actions at the EU level. The event will be streamed live on the internet.

Dr. Joan Lluis Vives-Corrons, coordinator of ENERCA, was invited by EURORDIS to present a snapshot of the European Reference Network that he leads. He will talk about pooling together expertise, efforts and resources to help patients and health professionals share preciously rare information about rare diseases across Europe, in order to improve care and quality of life for patients. Chris Sotirellis, from the UK Thalassemia Society and member of ENERCA, will explain the patient’s point of view.

The European Commission is preparing their budget for the period 2014-2020, and rare diseases should not disappear from the map. In this time of crisis in Europe it is more necessary than ever to show rare diseases is an area where Europe actually works and a positive example of EU solidarity. The EU added value in the field of RD is undeniable, progress is being made but there is still a lot to do.

The event will be streamed live on the internet via www.eurordis.org  and on www.facebook.com/rarediseaseday

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