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Rare Diseases Europe
An alliance of over 800 rare disease patient organisations working together to improve the lives of the 30m people living with a rare disease in Europe
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Rare Diseases Europe 17h
The EURORDIS Photo Award is open for submissions from around the world! Submit a photo that tells your story of living with a for the
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Rare Diseases Europe Nov 12
Apply now to attend face-to-face training on medicines research and development at the in Barcelona 8-12 June, open to patient advocates & researchers. Find out more:
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Rare Diseases Europe Nov 8
., Research & Policy Project Manager at EURORDIS presenting in Turkey on how to involve patients in research projects.
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Rare Diseases Europe Nov 8
Thank you for your continued support of the rare disease cause, in particular for being instrumental in the adoption of the foresight study of rare disease policy. Glad to continue our work together!
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Rare Diseases Europe Nov 8
The Panel of Experts met in person for the first time Brussels this week at the workshop on 'Validation of Trends to Build Future Scenarios in Rare Disease Policy'
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Foresight in Rare Disease Policy Nov 6
Watch live today from 9:00 - the opening of the Rare2030 Panel of Experts Workshop in Brussels
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Rare Diseases Europe Nov 6
The Council of National Alliances meeting together today in Brussels to discuss priorities.
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Rare Diseases Europe Nov 6
Launching today - submissions for the EURORDIS Photo Award! Submit a photo that captures daily life with a by 16 January.
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Rare Diseases Europe Nov 6
Tour de table at today’s EURORDIS Council of National Alliances meeting in Brussels - hot topics across many countries represented by the 20+ national alliances present include newborn screening and access to innovative/advanced therapies.
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Foresight in Rare Disease Policy Nov 5
Watch online this Thursday 7 November - the opening session of the Rare2030 Panel of Experts Workshop “Validation of Trends to Build Future Scenarios in Rare Disease Policy” will be live streamed at 9:00 – 13:00 Brussels time.
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Rare Diseases Europe Nov 4
The Fund Alphonse and Jean Forton and the Belgian Cystic Fibrosis Association are launching a joint call for research projects on in Belgium. Deadline 28 January. Find out more:
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Rare Diseases Europe Nov 1
The exhibition offering a unique insight into the life of Hollywood icon opens today in Amsterdam until 31 January. Proceeds will support EURORDIS' work advocating for rare disease patients & families.
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Rare Diseases Europe Oct 31
Cross-ERN collaboration is essential to address the needs of people living with a multi-system
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Rare Diseases Europe Oct 31
. & Simone Boselli will be contributing to discussions on advanced therapy medicinal products, early dialogue & the impact of digital tools on patient care at 12-14 Nov. Come along to the EURORDIS stall onsite to find out more.
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Rare Diseases Europe Oct 31
Stay up to date with the latest news from The European Conference on Rare Diseases & Orphan Products 15-16 May, Stockholm by following our new Linkedin page:
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Rare Diseases Europe Oct 30
Apply now to take part in face-to-face training on medicines research and development 8-12 June! Denica uses skills learnt at the to advocate for people who are living with a rare disease in North Macedonia.
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NORD Oct 29
Join us TOMORROW for our webinar "The FDA's Role in Gene Therapy"! Our speakers will discuss regulatory pathways for , how the CBER supports progress in gene therapy & helps expedite new product development for unmet medical needs. Register:
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EU_Health Oct 28
Follow today's on the findings of the evaluation of the EU legislation on blood, tissues and cells 🔴 opens the conference, the live steam is available here ➡️ More on the conference here ➡️
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Alström Syndrome UK Oct 25
Graphic novel 'A Puff of Smoke' is released next Friday. It tells the story of Lucy Lippett 11 year old wait for a diagnosis Hear her interview with Lucy McKay from
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Rare Diseases Europe Oct 25
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