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.

News & Media

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 "...
The International Rare Diseases Research Consortium (IRDiRC) is proud to announce the new vision and goals for 2017-2027. IRDiRC, officially launched in 2011, was originally conceived with two main goals: to contribute to the development of 200 new therapies and the means to diagnose most rare...
Orphanet (www.orpha.net) is a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. Orphanet aims to provide high-quality information on rare diseases, and ensure equal access to knowledge for all...
ECRIN has launched a call for pilot clinical studies to receive trial management support from the Paediatric Clinical Research Infrastructure Network (PedCRIN) project. The goal is to support the multinational extension of paediatric studies on medicinal products having already secured funding in...
In December 2015 E-rare launched the eigth E-Rare joint call (JTC 2016) for funding multilateral research projects on rare diseases on “Clinical research for new therapeutic uses of already existing molecules (repurposing) in rare diseases”. Fifteen countries joined this call: Austria, Belgium,...
At the occasion of the 10th anniversary of E-Rare, we are glad to share with you short movies on research projects funded by E-Rare. In this video, Dr Raul Estevez explain the project CLC & MLC, ‘CLC chloride channels and Megalencephalic leukoencephalopathy: molecular mechanisms and...
At the occasion of the 10th anniversary of E-Rare, we are glad to share with you short movies on research projects funded by E-Rare. In this video, Dr Marjon Pasmooij explain the project Splice-EB, ‘Splicing therapies for Dystrophic Epidermolysis Bullosa’.
E-Rare has already ten years! View the video we made at this occassion, learn more about E-Rare and see what rare diseases stakeholders think about us.    
The ninth E-Rare joint call for funding multilateral research projects on rare diseases (JTC2017) will be open on the December 5th 2016. The following 17 countries intend to participate in this call: Austria, Belgium, Canada (including Quebec), Finland, France, Germany, Greece, Hungary, Israel,...
Do you know an inspiring individual making a difference for the rare disease community? Nominate them for a EURORDIS Award!The EURORDIS Awards acknowledge the outstanding contributions of patient advocacy groups, volunteers, scientists, companies, media, and policy makers toward reducing the impact...

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