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Notizie

Pubblichiamo regolarmente articoli di notizie e comunicati stampa sugli ultimi sviluppi nella politica sulle malattie rare e sulle attività di EURORDIS. Cerca le ultime novità di EURORDIS di seguito. Ti invitiamo a iscriverti alla nostra eNews mensile per rimanere aggiornato su ciò che sta accadendo nel campo delle malattie rare sia in Europa che nel mondo. Ricevi gli aggiornamenti direttamente nella tua casella di posta e seguici su Twitter, Facebook, LinkedIn e Instagram!

Per informazioni sui media, contattare Stanislav Ostapenko, responsabile delle comunicazioni: stanislav.ostapenko@eurordis.org


NotizieBuilding 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: Luglio 6, 2022
NotizieDemystifying 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: Giugno 14, 2022
NotizieECRD 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: Giugno 9, 2022
NotizieECRD 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: Maggio 18, 2022
NotizieRacing 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: Aprile 28, 2022
NotizieEuropean 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: Aprile 13, 2022
NotizieThe 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
NotizieEURORDIS-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: Febbraio 24, 2022
NotizieRare 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: Febbraio 16, 2022
NotizieA 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: Febbraio 8, 2022
NotizieHow 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: Febbraio 8, 2022
NotizieThe 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: Febbraio 3, 2022

Press releases

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Press release

Rare Diseases in the global spotlight on 28 February

Date: Febbraio 16, 2022

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