Rare Disease Day 2020 will be celebrated this year on Saturday the 29th of February - a fittingly rare date! Coordinated by EURORDIS in partnership with National Alliances, the aim is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. Lead-up events throughout the month will be organised by members of the rare disease community including patient organisations, healthcare professionals, researchers, and policymakers across 101 countries.

Rare diseases will affect 1 in 20 people in their lifetime, but their rarity often leads to delays in diagnosis, and means that information and treatment options can be limited. Rare Disease Day is an opportunity to strengthen international cooperation, vital for identifying and classifying these diseases, coordinating research, and providing access to treatment and support for patients, their families, and carers.

For more information, go to the Rare Disease Day 2020 website.

 

The European Rare Disease Models & Mechanisms Network (RDMM-Europe) has been established by Solve-RD – an EU-funded research project. The overall aim is to boost research in rare diseases, discover new disease-causing genes and obtain evidence for pathogenicity through functional validation.

For more information, visit the following website.

EU GDPR - we want to make sure you still want to hear from us!

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ERA-Net for Research Programmes on Rare Diseases
EU GDPR - we want to make sure you still want to hear from us!
Dear Colleagues,
As you may have heard, the new General Data Protection Regulation (GDPR) comes into effect May 25, 2018. Your privacy comes first!
 
As you are part of E-Rare community and has expressed interest in our calls, conferences and rare diseases related news OR registered into our "Looking for collaborations" database over the last years, we are sending this notice in order to inform you of E-Rare data processing activities in relation to your personal information.
 
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