Rare Diseases Europe

@eurordis

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

Paris
Vrijeme pridruživanja: ožujak 2009.

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  1. prije 4 sata

    To mark the occasion of 2020 EURORDIS is organising ‘Reframe Rare’ a policy event on 18 February co-hosted by MEPs & .

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  2. prije 5 sati

    Final call to submit a poster abstract for by 10 February! Don't miss the chance to showcase your research at an event bringing together 800+ participants from 50+ countries to shape future policies.

    , , i još njih 7
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  3. prije 21 sat

    Have you voted for your favourite photo to win the EURORDIS Photo Award? The winning photo will be announced during the ceremony on 18 February. Vote now at

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  4. 5. velj

    EURORDIS proudly supports the , inspiring speeches from and calling for a Europe that strives to address the needs of people living cancer, including rare cancers.

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  5. 4. velj

    Results from a recent survey show that people living with a rare disease are willing to share their health data to foster research or to improve their healthcare. Read more:

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  6. 3. velj

    Only one week left to submit your poster abstract for for the chance to have your work featured at the largest, patient-led rare disease event. Find out more about the 8 poster themes:

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  7. 31. sij

    We are honoured to announce as posthumous Honorary Patron of EURORDIS. The late Hollywood actress and humanitarian passed away from the rare cancer pseudomyxoma peritonei, which affects only one in a million people.

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  8. 31. sij

    Check out a podcast series by about rare diseases, discussing topics such as genome editing and health care. Listen to the latest episodes:

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  9. 31. sij

    Read more about a case study suggesting we need to reconsider current marketing authorisation models and approaches for cancer medicines in Europe:

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  10. 30. sij

    Jana Popova is the recipient of the Young Patient Advocate Award 2020. Read more about her outstanding achievements: The ceremony will take place on 18 February in Brussels, register to attend:

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  11. 30. sij

    New graphic report showing the results & recommendations from the first international survey on rare disease patient perspectives on and data protection carried out by . Read more:

    , , i još njih 7
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  12. 29. sij

    Register for & conference on cutting-edge research & policies related to rare disease research 11-14 March, Berlin.

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  13. 28. sij

    Vote for your favourite photo to win the EURORDIS Photo Award 2020 by 18 February! Submit your vote at The winning photo will be announced during the EURORDIS Black Pearl Awards ceremony on 18 February.

    , , i još njih 7
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  14. 27. sij

    EURORDIS, together with its members, is proud to represent the patient voice at the in several committees and working parties that help bring innovative medicines to the rare disease community.

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  15. 27. sij

    . has published a study on the unmet needs of people living with rare metabolic diseases in Europe accessing EMA-approved orphan medicinal products. We encourage all ERNs to conduct similar studies in their disease area and share the results

    , , i još njih 7
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  16. 25. sij

    5 weeks to go until 2020 on 29 February. Check out this press release for the latest information on this year’s campaign.

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  17. 23. sij

    Are you conducting research on rare diseases or public health projects? Don't miss the chance to showcase your work at , submit your poster abstract by 10 February:

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  18. 23. sij

    We want to hear from you! Take the H-CARE Survey available in 23 languages and have your say on the healthcare you receive for your rare disease:

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  19. 20. sij

    Thank you for a fruitful discussion held in the context of on how to address the needs of adults & children affected by 1 of the 200 rare cancers every year. We look forward to contributing patients’ insights & co-designing concrete solutions

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  20. 20. sij

    Today EURORDIS is meeting with new Health Commissioner to convey our key recommendations to address the needs of rare cancers within Europe’s Beating Cancer Plan. We are proud to advocate for people with rare cancers on anniversary.

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