Rare diseases

European Commission to launch knowledge-sharing platform for rare diseases

Library / By

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 develop later in life, like Huntington’s disease. Regardless of the large total numbers of those affected in …

European Commission to launch knowledge-sharing platform for rare diseases Read More »

Rare diseases in the Finnish landscape

Library / By

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 industry to hep improve understanding of disease pathology and contribute to the development of better treatments, beginning with …

Rare diseases in the Finnish landscape Read More »

One-year anniversary of the European Reference Networks for rare diseases

Library / By

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 diagnosed with the disease as a small child. “I couldn’t play like other children” she recalled, …

One-year anniversary of the European Reference Networks for rare diseases Read More »

European Reference Networks

Library / By

European Reference Networks (ERNs) connect health care providers and centres of expertise to improve access to diagnosis, treatment and the provision of high-quality healthcare for patients with conditions requiring a particular concentration of resources or expertise no matter where they are in Europe. For clinicians who network widely already, the ERN will represent the formalisation …

European Reference Networks Read More »

European Reference Networks

Library / By

Imagine if the best specialists from across Europe could join their efforts to tackle complex or rare medical conditions that require highly specialised healthcare and a concentration of knowledge and resources. That’s the purpose of the European Reference Networks. Interest in becoming part of a Network can be registered from the 16 March 2016 and an …

European Reference Networks Read More »

Orphan medicinal products

Library / By

The European Commission has published an inventory of Union and Member State incentives to support research into, and the development and availability of, orphan medicinal products. To date, the Commission has authorised 117 orphan medicines for the benefit of patients suffering from rare diseases, 82{ddf8d179d1bf712bb2a88ff2ad95ebdf63eaa5463c845d2f093b25848387ba96} of which are new active substances. Around 25 of the …

Orphan medicinal products Read More »

Cross-border genetic testing of rare diseases

Library / By

Methods for carrying out genetic testing are developing at an unprecedented and unforeseen rate. Simultaneously, the overall number of genes linked to rare diseases (RD) is increasing. This means that it is now possible to provide an etiological diagnosis for several thousand RD(or ‘Mendelian’ diseases). Although accurate diagnosis enables specific treatment for only a minority …

Cross-border genetic testing of rare diseases Read More »

Rare diseases

Library / By

A disease or disorder is defined as rare in the EU when it affects less than five in every 10,000 citizens. However, because there are so many different rare diseases – between 6,000 and 8,000 – between 30 and 40 million people in the EU, many of whom are children, suffer from rare diseases. Most rare …

Rare diseases Read More »

Scroll to Top