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Jelena Malinina
role: Patient Data Director email: jelena.malinina@eurordis.org read more
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Toolkit to Support Integration of European Reference Networks and National...
date_published: April 2022 April 2022The European Reference Networks now have a clear governance structure for knowledge sharing and care coordination across the EU, but to benefit the 30 million...
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A EURORDIS report on the challenges faced by displaced Ukrainians affected by...
date_published: April 2022 April 2022This report provides an overview of the greatest needs facing Ukrainian families living with a rare disease now staying in Poland after being displaced by the war....
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Звіт організації EURORDIS щодо становища українців, що мають рідкісні хвороби...
date_published: April 2022Квітень 2022Цей звіт надає загальну картину найбільших потреб, з якими стикнулися українські сім‘ї, які живуть з рідкісними хворобами і наразі переїхали до Польщі через війну...
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A EURORDIS report from the High-level Ministerial Conference on Rare Diseases
date_published: March 2022 March 2022On 28 February 2022, the Ministerial Conference on Innovation and Care Pathways: For a European policy on rare diseases took place in Paris at the French Ministry...
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Kirsten Johnson
The Fragile X Society (UK)e-mail: kirsten@fragilex.org.ukwww.fragilex.org.ukread more
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Become a Parliamentary Advocate for Rare Diseases
date_published: May 2022The network of Parliamentary Advocates for Rare Diseases is a dynamic all-party group of Members of the European Parliament and national parliamentarians who advocate for the...
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EURORDIS Activity report 2021
date_published: May 2022View the EURORDIS Activity report 2021thumbnail:
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EFPIA-EURORDIS Joint Statement on Patient Access to Medicines for Rare Diseases
date_published: June 2022 June 2022Patient access to oprhan medicinal products (OMPs) across Europe remains imperfect, inequitable, and routinely delayed. EURORDIS and EFPIA, which share the goal of...
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A EURORDIS report on the challenges faced by displaced Ukrainians affected by...
date_published: June 2022 June 2022This second report in the series of EURORDIS' reports on the challenges faced by displaced Ukrainians affected by a rare disease focuses on the support provided to...
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