Rezultati pretraživanja
  1. 3. velj

    Chalk talk Today’s topic: Is your negative self talk always yours? via #undiagnosedhelp

  2. 2. velj

    Come Back In 2 Weeks (You Can Be Seen in 6 Weeks) via

  3. 3. sij

    Did you know ’s new board chair, , is who was before his brain aneurysm ruptured? Listen to his story here

    6 proslijeđenih tweetova 12 korisnika označava da im se sviđa
  4. 16. kol 2019.

    "Diagnosis" is now available for streaming on & follows various patients on their respective journeys. was honored to help spread the word about this opportunity when Netflix was recruiting patients for the show.

    37 proslijeđenih tweetova 76 korisnika označava da im se sviđa
  5. 29. srp 2019.

    The everyday life of a family with two children affected by diseases is captured in a short documentary The Unconditional, a heartrending look into the challenges that special-needs kids and their parents face behind closed doors.

    5 proslijeđenih tweetova 8 korisnika označava da im se sviđa
  6. 29. tra 2019.

    For patients with rare diseases, like , it often takes several different doctors and years of unresolved symptoms before reaching a diagnosis. Retweet and join us in raising awareness for & the community!

    16 proslijeđenih tweetova 19 korisnika označava da im se sviđa
  7. 17. velj 2019.

    My boy has a voice and one way or another, we speak the same language.

    3 proslijeđena tweeta 21 korisnik označava da mu se sviđa
  8. 3. pro 2018.

    It's International Day of Persons with Disabilities. This is my beautiful boy Brody who has an genetic syndrome, , and an amazing sense of humour. I want to make the world a better place for him

    21 reply 211 proslijeđenih tweetova 861 korisnik označava da mu se sviđa
  9. 31. kol 2018.

    . have just launched their new for young people explaining the limitations and uncertainties of . Some of us were involved in making it! You can watch it here: 

    4 proslijeđena tweeta 6 korisnika označava da im se sviđa
  10. 1. kol 2018.

    We're so excited to see one of the original poster boys Hugh and his awesome new furry friend getting so much attention! Hugh and his mum Emma were in one of our first videos back in 2013 telling their story. Watch it here:

    0:28
    We took a year to decide to get a dog. We’ve had Barney 4 weeks. He’s a crazy, bouncy, yampy puppy that gets so excited he wees! Yet with Hugh, my wonderful, profoundly disabled, son he’s calm & understanding. Definitely the right decision.
    Prikaži ovu nit
    10 proslijeđenih tweetova 58 korisnika označava da im se sviđa
  11. 26. lip 2018.

    Becky thought she was dying after 17 months of blisters in her mouth & throat. Her eventual diagnosis led her to a & recovery:

    3 proslijeđena tweeta 11 korisnika označava da im se sviđa
  12. 3. svi 2018.

    Alastair Kent OBE, was Director of Genetic Alliance UK for over 20 years, Ambassador since 2017 and Chair of until 2017, is retiring. We thank Alastair for his hard work for all those with , and conditions:

    6 proslijeđenih tweetova 14 korisnika označava da im se sviđa
  13. 26. tra 2018.

    Fantastic event today for families of children. Thanks to those who came along. Here our consultant clinical geneticist Dr Usha Kini explains why the event and the project are important

    9 proslijeđenih tweetova 9 korisnika označava da im se sviđa
  14. 23. tra 2018.

    All rare diseases were once . Undiagnosed Rare Disease Day is coming up on April 29th! Help us raise awareness this week for and for community. Thank you for donating our RUN video.

    10 proslijeđenih tweetova 19 korisnika označava da im se sviđa
  15. 16. ožu 2018.

    My boy. 9 yrs old. Taking his first unassisted steps today 😍 We never knew if this day would come. So amazed by his strength and perseverance. I think my ❤️ might burst

    7 replies 5 proslijeđenih tweetova 111 korisnika označava da im se sviđa
  16. 4. ožu 2018.

    Have you watched Ellie's story? In this clip, Ellie explains why some disabled children remain , the impact this has on families and the support they receive from . Watch this short, animated video here:

    7 proslijeđenih tweetova 9 korisnika označava da im se sviđa
  17. 15. pro 2017.

    What is life like living with a causing ? Find out what my life is like with my , multiple & all the care I require to survive.

    4 proslijeđena tweeta 4 korisnika označavaju da im se sviđa
  18. 15. pro 2017.

    What's it like to live with an condition? is a charity working for people with undiagnosed conditions or "Syndromes Without A Name". Do check out their website

    4 proslijeđena tweeta 8 korisnika označava da im se sviđa
  19. 29. tra 2016.

    We love this video for and its top tips for patients!

    10 proslijeđenih tweetova 8 korisnika označava da im se sviđa
  20. 29. tra 2016.

    Our will be home to our rare disease centre, which will treat our children

    1 reply 7 proslijeđenih tweetova 7 korisnika označava da im se sviđa

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