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

Orphanet unveils a new website to mark its 20th year

Orphanet unveils a new website to mark its 20th year

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 stakeholders. Orphanet also maintains the Orphanet rare disease nomenclature (ORPHA number), essential in improving the visibility of rare diseases in health and research information systems.

Orphanet was established in France by the INSERM (French National Institute for Health and Medical Research) in 1997. This initiative became a European endeavour from 2000, supported by grants from the European Commission: Orphanet has gradually grown to a Consortium of 40 countries, within Europe and across the globe.

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

The new site is designed be easier to navigate and read, with simplified search options and a responsive design. Orphanet called on the expertise of the digital communications agency Addictic for this makeover.

The Orphanet team hopes that the new format will make the data in Orphanet easier to find for its different audiences. Further evolutions to improve the way data is searched and displayed will follow later in the year. Users’ feedback will be sought in the next annual Orphanet satisfaction survey.

E-Rare 2012 - Created by Toussaint Biger