Rare Disease Day: a new EU platform to support better diagnosis and treatment

The European Commission launched, on Rare Disease Day 2019, a new online knowledge-sharing platform, the European Platform on Rare Diseases Registration. It aims to support better diagnosis and treatment of more than 30 million Europeans living with a rare disease.

Nowadays, there are about 600 registries spread across Europe containing a huge amount of data on patients with specific conditions. There is a real need to collect this information at EU level and put in place common standards to analyse it. European collaboration is key to enhance the quality of research on rare diseases and ultimately, the diagnosis and treatment of patients.

You can read the full press release here and watch the informational video below.