28 February 2019

Rare Disease Day 2019!!

Find out what happened in February by visiting the Rare Disease Day website

People around the world are joining the global movement for rare diseases by taking part in the #ShowYourRare campaign, holding events and raising awareness. There are over 6,000 rare diseases. 30 million people are living with a rare disease in Europe and over 300 million worldwide.

Medical expertise and knowledge on rare diseases is scarce and scattered across borders.

People often wait years for a diagnosis and struggle to access the medicines or care they need.

This year’s theme is ‘Bridging health and social care’; Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for rare disease patients and families.

Rare Disease Day is for everyone-individuals and families directly affected by rare diseases, caregivers, medical professionals, policy makers, companies, researchers and members of the general public can all get involved to show their support for the global rare disease community. Find out mouch more about the day itself from the Rare Disease Day website.

The ERNs are co-funded by the
European Union (Health Programme and CEF)

EU Commission

“EURO-NMD is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Union (Health Programme and CEF).
For more information about the ERNs and the EU health strategy,
please visit ec.europa.eu/health/ern