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Eurordis - Rare Disease Europe

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News

We regularly publish news articles and press releases on the latest developments in rare disease policy and EURORDIS activities. Search for the latest new from EURORDIS below. We encourage you to sign up to our monthly eNews to stay up to date with what is happening in the rare disease field both in Europe and globally. Receive updates direct to your inbox and follow us on Twitter, Facebook, LinkedIn and Instagram!

For media enquires please contact Stanislav Ostapenko, Communications Manager: stanislav.ostapenko@eurordis.org


NewsOfficial Rare Disease Day 2017 video out now!On Tuesday 28 February, patients around the world will mark the tenth annual Rare Disease Day. The official Rare Disease...Date: January 24, 2017
News2017: Looking forward as EURORDIS celebrates 20 years2017 marks the 20th anniversary of EURORDIS-Rare Diseases Europe. 20 years of achievements The rare disease community, including all rare...Date: January 11, 2017
NewsWinners of the EURORDIS Photo Contest 2016!The EURORDIS Photo Contest is an opportunity to visually highlight what it means to live with a rare disease. The...Date: December 12, 2016
News100 days to Rare Disease Day 2017!The countdown has begun! With only 100 days left until the tenth edition of Rare Disease Day on Tuesday 28...Date: November 20, 2016
NewsNGO Committee for Rare Diseases launches at UN HeadquartersA NGO Committee for Rare Diseases launches this Friday at the United Nations headquarters in New York. Participate in the...Date: November 9, 2016
NewsTake part in multi-stakeholder debate on access to therapiesImproving patients’ access to rare disease therapies has long been a priority for EURORDIS and its member organisations throughout Europe....Date: October 26, 2016
NewsTrain to become an expert in medicines R&DPatients are taking on an ever-increasing role in advocating for improved medicines development and faster, equal access to treatments across...Date: October 12, 2016
NewsGet involved in European Reference NetworksDue to the nature of rare diseases, small patient populations are often scattered across the EU, sometimes in isolated locations...Date: September 28, 2016
NewsNominations for the EURORDIS Awards 2017 now open!EURORDIS is now accepting nominations for the 6th Annual EURORDIS Awards! This is your opportunity to nominate the individual, rare disease patient...Date: September 14, 2016
NewsRare disease game changers at ECRD 2016The 8th edition of the European Conference on Rare Diseases & Orphan Products (ECRD 2016) brought together over 750 attendees...Date: July 27, 2016
NewsPatients & researchers team up at the EURORDIS Summer School 2016The 2016 ExPRESS Expert Patient and Researcher EURORDIS Summer School recently brought together over 80 participants and speakers to learn...Date: July 11, 2016
NewsYann Le Cam appointed to Board of the European Medicines AgencyYann Le Cam, Chief Executive Officer of EURORDIS, was recently appointed to the Management Board of the European Medicines Agency...Date: June 29, 2016

Press releases

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Press release

Czech Deputy Health Minister calls for a European Union Action Plan on rare diseases, as Czechia takes over the EU Presidency

Date: July 1, 2022

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Press release

Deputy Minister of Health of Ukraine calls for “humanitarian and financial support from pharmaceutical companies and colleagues from EURORDIS” to support Ukrainians with rare diseases in the years to come

Date: June 28, 2022

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Press release

Largest patient-led conference kicks off with a call for a coordinated EU strategy on rare diseases

Date: June 27, 2022

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