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Eurordis - Rare Disease Europe

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Новости

Мы регулярно публикуем новостные статьи и пресс-релизы о последних изменениях в политике в отношении редких заболеваний и деятельности EURORDIS. Ищите последние новости от EURORDIS ниже. Мы рекомендуем вам подписаться на наши ежемесячные электронные новости, чтобы быть в курсе того, что происходит в области редких заболеваний как в Европе, так и во всем мире. Получайте обновления прямо на свой почтовый ящик и следите за нами в Twitter, Facebook, LinkedIn и Instagram!

По вопросам СМИ обращайтесь к Станиславу Остапенко, менеджеру по коммуникациям: stanislav.ostapenko@eurordis.org


НовостиBuilding 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: 6 июля, 2022
НовостиDemystifying 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: 14 июня, 2022
НовостиECRD 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: 9 июня, 2022
НовостиECRD 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: 18 мая, 2022
НовостиRacing 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: 28 апреля, 2022
НовостиEuropean 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: 13 апреля, 2022
НовостиThe 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: 10 марта, 2022
НовостиEURORDIS-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: 24 февраля, 2022
НовостиRare 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: 16 февраля, 2022
НовостиA 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: 8 февраля, 2022
НовостиHow 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: 8 февраля, 2022
НовостиThe 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: 3 февраля, 2022

Press releases

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Rare Diseases in the global spotlight on 28 February

Date: 16 февраля, 2022

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