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Eurordis - Rare Disease Europe

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Noticias

Publicamos regularmente artículos de noticias y comunicados de prensa sobre los últimos avances en la política de enfermedades raras y las actividades de EURORDIS. Busque las últimas novedades de EURORDIS a continuación. Le animamos a que se suscriba a nuestras noticias electrónicas mensuales para estar al día de lo que sucede en el campo de las enfermedades raras tanto en Europa como a nivel mundial. ¡Reciba actualizaciones directamente en su bandeja de entrada y síganos en Twitter, Facebook, LinkedIn e Instagram!

Para consultas de los medios, comuníquese con Stanislav Ostapenko, Gerente de Comunicaciones: stanislav.ostapenko@eurordis.org


NoticiasBuilding 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: julio 6, 2022
NoticiasDemystifying 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: junio 14, 2022
NoticiasECRD 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: junio 9, 2022
NoticiasECRD 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: mayo 18, 2022
NoticiasRacing 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: abril 28, 2022
NoticiasEuropean 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: abril 13, 2022
NoticiasThe 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: marzo 10, 2022
NoticiasRare 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: febrero 16, 2022
NoticiasEURORDIS-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: febrero 16, 2022
NoticiasA 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: febrero 8, 2022
NoticiasHow 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: febrero 8, 2022
NoticiasThe 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: febrero 3, 2022

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Rare Diseases in the global spotlight on 28 February

Date: febrero 16, 2022

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