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.

To mark its 20th anniversary, the Orphanet website is undergoing a complete makeover, starting with the look and feel of the site.

 

E-Rare associates with Blackswan Foundation to co-organize 4th International Congress on Reaserch of Rare and Orphan Diseases - RE(ACT) 2018.

The congress will take place from 7-10 of March 2018 in Bologna, Italy.

 

European Medicines Agency has published the final guidance document for applicants to Horizon 2020 topic “New therapies for rare diseases” on the EMA website. Find more information HERE

News & Media

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...
CORBEL seeks to harmonise access to European research infrastructures joining their various expertise across the range of life science disciplines. This facilitated access is of particular relevance for advanced interdisciplinary research projects, which could highly benefit from the integration of...
BBMRI- LPC (Biobanking and Biomolecular Resources Research Infrastructure – Large Prospective Cohorts) is one of the largest biobanking networks in Europe aiming to facilitate scientists’ access to large prospective study sets on human health and disease. The 2016 BBMRI – LPC Whole Exome Sequencing...

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E-Rare 2012 - Created by Toussaint Biger