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Wir veröffentlichen regelmäßig Nachrichtenartikel und Pressemitteilungen zu den neuesten Entwicklungen in der Politik für seltene Krankheiten und den Aktivitäten von EURORDIS. Suchen Sie unten nach den neuesten Nachrichten von EURORDIS. Wir empfehlen Ihnen, sich für unsere monatlichen eNews anzumelden, um auf dem Laufenden zu bleiben, was auf dem Gebiet der seltenen Krankheiten sowohl in Europa als auch weltweit passiert. Erhalten Sie Updates direkt in Ihren Posteingang und folgen Sie uns auf Twitter, Facebook, LinkedIn und Instagram!

Bei Medienanfragen wenden Sie sich bitte an Stanislav Ostapenko, Kommunikationsmanager: stanislav.ostapenko@eurordis.org


NachrichtenBuilding the future of a rare disease ecosystem: In conversation with Professor Hans-Georg EichlerWith the 11th European Conference on Rare Diseases and Orphan Products just around the corner, we asked Professor Hans-Georg Eichler — consultant...Date: Juli 6, 2022
NachrichtenDemystifying HTA: patients’ role in new legislationEarlier this year, the EU Regulation on Health Technology Assessment (HTA) – a deliverable of the EU Pharmaceutical Strategy – entered into...Date: Juni 14, 2022
NachrichtenECRD and the road to equity: In conversation with patient advocate Rebecca SkarbergAhead of the 11th European Conference on Rare Diseases and Orphan Products on 27 June – 1 July, we asked Rebecca Skarberg,...Date: Juni 9, 2022
NachrichtenECRD 2022: Solving the complex challenges faced by people living with a rare disease in EuropeFrom 27 June to 1 July, join us at the 11th edition of the European Conference on Rare Diseases and...Date: Mai 18, 2022
NachrichtenRacing against time: Seeking the cure for a deadly disease“Still, today, I believe that the period of 50/50 limbo while we were waiting for the test was the hardest...Date: April 28, 2022
NachrichtenEuropean Health Data Space: Unlocking the potential of health data for rare diseasesSharing health data to advance scientific research and improve clinical practice is of particular importance to the rare disease community,...Date: April 13, 2022
NachrichtenThe power of knowledge: how the EURORDIS Open Academy is empowering patient advocates to challenge the status quo of rare diseasesFor more than twenty-five years, EURORDIS-Rare Diseases Europe has been at the forefront of advocating for people living with a...Date: März 10, 2022
NachrichtenEURORDIS-Rare Diseases Europe calls on the international community to prepare for a potential crisis and address the challenges of people living with a rare disease in Ukraine24 February, Paris – EURORDIS-Rare Diseases Europe stands in solidarity with the Ukrainian people and would like to extend support to...Date: Februar 24, 2022
NachrichtenRare Diseases in the global spotlight on 28 February“I’ve dedicated myself to this fight so that all patients […] get access to treatment and innovative therapy. I want...Date: Februar 16, 2022
NachrichtenA Young Patient Advocate, a Policy Maker and a Scientist: Meet the 2022 Black Pearl AwardeesOn Tuesday, the Black Pearl Awards ceremony took place online, celebrating and recognising the outstanding achievements of the rare disease...Date: Februar 8, 2022
NachrichtenHow media is breaking isolation and fostering community for people living with a rare disease: meet the 2022 Black Pearl AwardeesThe Black Pearl Awards shine a light on the remarkable efforts to build a brighter future for everyone living with...Date: Februar 8, 2022
NachrichtenThe Leaders and Lifetimers of the Rare Disease Community: Meet the 2022 Black Pearl AwardeesThe countdown to the Black Pearl Awards Ceremony is officially on, with just 4 days to go! In this article...Date: Februar 3, 2022

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Rare Diseases in the global spotlight on 28 February

Date: Februar 16, 2022

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