To support better diagnosis and treatment, the European Commission is launching a new online knowledge-sharing platform for more than 30 million Europeans living with rare diseases. Rare diseases can affect individuals from birth, like cystic fibrosis, or it can...
Health Europa introduces the New Modalities Ecosystem, which will exploit Finnish expertise to deliver new treatments and technologies for rare diseases. The New Modalities Ecosystem – launched by Orion and supported by Business Finland – brings academia together with...
A report by Vytenis Andriukaitis, European Commissioner for Health and Food Safety: Elisa from Alessandria in Italy suffers from osteogenesis imperfecta. This rare genetic disease causes brittle bones and affects only one in 15 000 people. Elisa, aged 30, was...
The European Commission has initiated a series of European Reference Networks (ERNs) to share expertise in specific medical areas. Any group of at least 10 healthcare providers established in at least 8 Member States were invited to submit an application to establish...
The European Commission’s Expert Group on Rare Diseases has published its recommendations to support the incorporation of rare diseases into social services and policies. Studies have demonstrated that the quality of life for someone with a rare chronic disease...