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Publicamos regularmente artigos de notícias e comunicados de imprensa sobre os mais recentes desenvolvimentos na política de doenças raras e nas atividades da EURORDIS. Procure as últimas novidades da EURORDIS abaixo. Incentivamos você a se inscrever em nosso eNews mensal para se manter atualizado sobre o que está acontecendo no campo das doenças raras, tanto na Europa quanto no mundo. Receba atualizações diretamente na sua caixa de entrada e siga-nos no Twitter, Facebook, LinkedIn e Instagram!

Para consultas de mídia, entre em contato com Stanislav Ostapenko, Gerente de Comunicações: stanislav.ostapenko@eurordis.org


AtualidadesBuilding 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: Julho 6, 2022
AtualidadesDemystifying 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: Junho 14, 2022
AtualidadesECRD 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: Junho 9, 2022
AtualidadesECRD 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: Maio 18, 2022
AtualidadesRacing 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
AtualidadesEuropean 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
AtualidadesThe 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: Março 10, 2022
AtualidadesEURORDIS-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: Fevereiro 24, 2022
AtualidadesRare 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: Fevereiro 16, 2022
AtualidadesA 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: Fevereiro 8, 2022
AtualidadesHow 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: Fevereiro 8, 2022
AtualidadesThe 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: Fevereiro 3, 2022

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Rare Diseases in the global spotlight on 28 February

Date: Fevereiro 16, 2022

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