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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


NewsRare Disease Day: It just keeps getting better!Rare Disease Day 2014 is shaping up to be the biggest awareness-raising campaign for rare diseases yet! With only one...Date: January 29, 2014
NewsRareConnect reaches important milestone with 50th rare disease community!RareConnect has reached an important milestone with its 50th rare disease online community for multiple endocrine neoplasia!  RareConnect, an initiative of...Date: January 22, 2014
NewsMeet the Rare Disease Day Ambassador 2014: Sean Hepburn FerrerEURORDIS is delighted to announce the Rare Disease Day 2014 Ambassador: Sean Hepburn Ferrer. Born in Lucerne, Switzerland, Sean Hepburn...Date: January 15, 2014
NewsEURORDIS priorities and perspectives for 2014We wish all our members, patient advocates, and stakeholders a wonderful 2014! A new year is upon us and a...Date: January 8, 2014
NewsEURORDIS Photo Contest 2013: three winners selected from hundreds of entriesThe EURORDIS Photo Contest 2013 received over 300 entries from 47 different countries and representing over 120 different rare diseases....Date: December 18, 2013
NewsAs the end of 2013 approaches, what is the status of EU national rare disease plans?As 2013 draws to a close, EU countries are busy formulating, adopting, implementing, or renewing their strategies for providing care...Date: December 11, 2013
NewsNew EURORDIS book presents the rare disease patients’ perspective on registriesA new EURORDIS book, The Voice of Rare Disease Patients: Experiences and Expectations of over 3,000 Patients on Rare Disease...Date: December 4, 2013
NewsThe European Conference on Rare Diseases & Orphan Products (ECRD Berlin 2014): creating sustainable strategiesMembers of the rare disease community will be gathering in Berlin, Germany, on 8-10 May 2014 for the European Conference...Date: November 27, 2013
NewsThere are only 100 days left until 28 February 2014 – Rare Disease Day!rarediseaseday.org is the reference website for Rare Disease Day – containing everything you need to plan an event … or...Date: November 20, 2013
NewsEURORDIS InfoHub helps identify reliable rare disease information for patients and familiesThese days, the Internet is the first place people living with a rare disease often find themselves. Searching for rare...Date: November 13, 2013
NewsRD-Connect puts the spotlight on data sharing and patient consentA stakeholder conference for EU project RD-Connect took place in Brussels in October 2013, and EURORDIS, as co-organiser, ensured that...Date: November 6, 2013
NewsCommon Position adopted for preventing, managing and solving medicine shortagesThe shortage of medicines is a growing problem, one which is potentially dangerous for all patients. Currently, there exist a...Date: October 23, 2013

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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