High Patronage of the European Parliament
In EU countries, any disease affecting fewer than 5 people in 10 000 is considered rare. This number may seem small, but it translates into approximately 246 000 people throughout the EU’s 28 member countries. Most patients suffer from even rarer diseases affecting 1 person in 100 000 or more. It is estimated that today in the EU, 5-8000 distinct rare diseases affect 6-8% of the population – between 27 and 36 million people.
EU effort is focused on:
- Improving recognition and visibility of rare diseases
- Ensuring that rare diseases are adequately coded and traceable in all health information systems
- Supporting national plans for rare diseases in EU member countries
- Strengthening European-level cooperation and coordination
- Creating European reference networks linking centres of expertise and professionals in different countries to share
knowledge and identify where patients should go when expertise is unavailable in their home country
- Encouraging more research into rare diseases
- Evaluating current screening population practices
- Supporting rare diseases registries and providing a European Platform for rare diseases registration
As an international Duchenne community we are very grateful to the European Parliament for this important recognition and the effort in fighting rare diseases.