Rare Disease UK

@rarediseaseuk

National campaign run by to improve the lives of those affected by rare diseases and all who support them . Monitored weekdays 9-5.

UK
Vrijeme pridruživanja: ožujak 2011.

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  1. Prikvačeni tweet
    8. sij

    Book your tickets now for the Rare Film Festival Awards Ceremony at on 10 February 2020! Get yours here:

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  2. Are you satisfied with the healthcare you receive for your ? Do you think your healthcare is well organised? Share your views via the new H-CARE Survey:

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  3. 4. velj

    Today we acknowledge all our patient organisations that support people affected by rare cancers. See them here:

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  4. 4. velj

    Does your company want to come to ? We have just released new tickets due to high demand! Get them before they're gone:

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  5. 1. velj

    Want to get involved in this year and take up a new challenge? Email jan.bochinski@geneticalliance.org.uk to find out about fundraising.

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  6. 31. sij

    David is the only person in the UK with the , occipital horn syndrome. He discusses his experience of having an invisible illness and his hopes for the future in

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  7. proslijedio/la je Tweet
    31. sij

    Also very pleased mentioned our work with on terminology, when introducing yesterday's debate Transcript at Our work on terminology can be read at &

    , , i još njih 7
    Prikaži ovu nit
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  8. 30. sij

    Got your tickets for yet? Hurry as spaces are limited!

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  9. 29. sij

    For this year we are hosting three receptions across the UK in Cardiff, London and Edinburgh to raise awareness of .

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  10. proslijedio/la je Tweet
    28. sij

    . is holding a film festival to mark the occasion of 2020! What kind of event are you organising in your country?

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  11. 28. sij

    Looking to kick-start your career in fundraising and help support the community? Apply for our Grants and Trusts Fundraising Intern post. Hurry as applications close at 9:00 tomorrow morning!

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  12. 28. sij

    Are you interested in showcasing your research to 850+ rare disease representatives? Submit a poster abstract to by 10 February on one of eight themes related to and orphan drugs.

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  13. 27. sij
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  14. 26. sij

    Tickets to the Rare Film Festival Awards Ceremony are almost sold out! Get your tickets before they're gone:

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  15. 24. sij

    Catch up on the story of 18 month old Ethan, who has an undiagnosed condition, and tune into at 6:30 tonight to find out more

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  16. 23. sij

    Everyone is invited to the UK’s first ever Rare Film Festival on 10 Feb 2020 - an unforgettable night with award-winning films raising awareness of rare diseases. To meet us and the community, buy your tickets here -

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  17. 22. sij

    We are at the launch of the new campaign we supported, , which calls for the voices of those with to be heard 📣

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  18. 22. sij

    Do you have a or do you care for someone that does? Let us know your thoughts about in our focus groups.

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  19. 22. sij

    Tune into at 13:00 today to see our Chief Executive, talk about our 1 in 17 campaign 🧬📺

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  20. 21. sij
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  21. 21. sij

    The awards are almost here! Industry partners, join us and the rare disease community on 10 February for a night full of inspiring, award-winning films. Purchase tickets here for the Rare Film Festival:

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