World Duchenne Awareness Day 2019 will be celebrated under the High Patronage of the European Parliament
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.
The EU’s strategic objective for rare diseases is to improve patient access to diagnosis, information and care. It assists in pooling scarce resources spread across the EU, enabling patients and professionals to share expertise and information. Specific measures include:
- Improvingrecognition and visibility of rare diseases.
- Ensuring that rare diseases are adequately coded and traceable in all health information systems.
- Supportingnational plans for rare diseases in EU countries
- CreatingEuropean reference networks linking centers of expertise and professionals in different countries to share knowledge and identify alternative treatment options
As an international Duchenne Communitywe are very grateful to the European Parliament for this important recognition and the effort in fighting rare diseases.