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Eurordis - Rare Disease Europe

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Sosteniamo, responsabilizziamo e coinvolgiamo le persone che vivono con una malattia rara in Europa

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Ultime notizie ed eventi

Involving those who matter most: Improving patient engagement in the development of medicinesFrom launching applications to next year’s Open Academy Schools, to supporting the new, EU-funded REMEDi4ALL project on medicines repurposing, we...
Open letter: ECRD partner organisations call on the European Commission for a new European strategy on rare diseasesEURORDIS, alongside 57 partner organisations of the European Conference on Rare Diseases and Orphan Products 2022, co-signed a letter to...
Celebrating our rare disease stars: an interview with young patient advocate Danielle DrachmannEach year, the EURORDIS Black Pearl Awards recognise the outstanding efforts of individuals, organisations and companies who dedicate their lives...
Building 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...
Demystifying 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...
ECRD 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,...

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