E-Rare will organize a workshop on data sharing and harmonization in order to promote those issues in the rare disease research community. The workshop will take place on the 4th of May in Berlin, Germany at the Ramada hotel and will be preceded by a poster session in the late afternoon of the 3rd of May.

For more information.

You can register until the 7 of April 2017 and submit an abstract for a poster HERE.


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

10 years of E-Rare video

10 years of E-Rare video

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.



E-Rare 2012 - Created by Toussaint Biger