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

E-Rare Newsletter February 2016

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E-Rare Newsletter February 2016

Join us in making the voice of rare diseases heard

29 February 2016 is Rare Disease Day! Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

Since  Rare  Disease  Day  was  first  launched  by  EURORDIS  and  its  Council  of  National Alliances  in  2008, thousands  of events  have  taken place  throughout  the  world  reaching hundreds of thousands of people and resulting in a great deal of media coverage.

On rarediseaseday.org you  can  find  information  about  the  thousands  of  events  happening around the world to build awareness for people living with a rare disease and their families.

We are delighted to share with you the 2016 Rare Disease Day video. The video celebrates the special moments in the lives of people living with a rare disease.

Did you know that E-Rare is cellebrating its 10th anniversary in 2016?

To mark the occasion, E-Rare is going to issue a serie of special documents and movies throughout the year that we will be happy to share with you!
Have a look at the E-Rare 10 years anniversary brochure to discover more on the work and the results of E-Rare from 2006 to 2016.

www.e-rare.eu contact@erare.eu

E-Rare 2012 - Created by Toussaint Biger