NPUK

@NiemannPickUK

Niemann-Pick UK is a charity providing support to those affected by Niemann-Pick Disease a group of rare, inherited, life-limiting diseases.

Washington, Tyne and Wear
Vrijeme pridruživanja: srpanj 2010.

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  1. 31. sij

    Our first ever Niemann-Pick UK e-newsletter is making the rounds! We intend for this newsletter to be a monthly round up on all things NPUK inbetween issues of our bi-annual magazine, NPUK News. Check it out here:

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    16. sij

    Did you know... Sensory bags are available in the Royal Hospital for Children outpatient clinics if your child becomes stressed or agitated while waiting for an appointment. Just ask at the clinic desk!

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    14. sij

    Do you have a ? Take part in our focus groups to have a say in how your care is coordinated.

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  4. 15. sij

    We are over the moon to hear that our latest short film, Go Make Memories, has been shortlisted for the ...thank you to everyone who voted! We nervously wait for the next stage 🤞🤞😂😂

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    1. sij

    Happy New Year! What’s been your favourite memory of 2019?

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    The deadline to nominate advocates, organizations & researchers for a Rare Impact Award is Thursday, January 2nd. Acknowledge the change-makers in your rare community by nominating them at . 🦓

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    25. pro 2019.

    Merry Christmas to all our rare warrior friends! !

    , , i još njih 7
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    25. pro 2019.

    Merry Christmas! We hope everyone is having some festive fun!

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    Breaking News: The FDA have granted ’s drug, , for the treatment of , Fast Track designation. Fast Track designation is designed to expedite the development and review of drugs. Read more >>

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    11. pro 2019.
    Odgovor korisnicima

    it’s a great charity, it helps so many people with this Rare incurable Diease they have helped my Son so much

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    8. pro 2019.

    It's week! If you have not done so already, tweet your candidate via to ask them to sign ✍️. Let's ensure the voices of patients are heard!

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  13. 9. pro 2019.
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    As we all continue to shop for gifts 🎁 can I ask you to consider donating any unwanted gifts 🎁 you may have- either those bought for you or if there’s a “buy 3 for the price of 2” if you don’t need 3 please get it and give to us for our 2020 events (there’s lots happening) TYIA

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    9. pro 2019.

    There's still time to apply for this exciting opportunity with the INPDR. Wouldn't it be amazing to start 2020 with a new job that will make a real difference to the Niemann-Pick and rare disease communities!?

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    6. pro 2019.

    Louise Metcalf from Niemann-Pick UK shares their projects and insights

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    1. pro 2019.

    Disorder: The Rare Disease Festival showed nearly 60 films about various such as giant axonal neuropathy, Huntington's disease, cystic fibrosis, Batten disease and more

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  18. proslijedio/la je Tweet
    1. pro 2019.

    Is it fair that patients have to fight for access to life-changing treatments? Will your future MP work to fix the problems? Check

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  19. proslijedio/la je Tweet

    We've put short film I made online. It's about 9 yr old Edinburgh boy, Alexander, who has Niemann-Pick C disease: . It's sad. He's lovely. Please watch + RT. Thank you

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  20. 26. stu 2019.

    Amazing news! "Go Make Memories" was just selected by via !

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