Rezultati pretraživanja
  1. 24. ruj 2019.

    Are you ? Get in touch with us to volunteer, learn more information, and find ways to partner with the rare disease community.

  2. 14. kol 2018.
  3. 28. velj 2019.

    Happy Rare Disease Day!! 💙 are you ?

  4. 1. ožu 2018.

    Mariam al-Attar, winner of the student voice essay competition, raising awareness of the difficulty of procuring rare disease treatment

  5. 8. tra 2019.

    Wonderful to see our latest exhibition on display to highlight the impact of rare disease. It is in in wrexham until 5 May.

  6. 16. ruj 2019.

    fact: A rare disease is defined by the EU as affecting fewer than 1 in 2,000 people. With a total of 7,000 known rare diseases, they are individually rare but collectively common

  7. 15. ruj 2017.

    September is let's make some noise about and make people !

  8. So excited to be collaborating with on this patient perspectives event with talks about how to handle rare diseases in primary care. Limited tickets. 1st March 2018 Sign up here: …/1FAIpQLSeGbex6YncdBgAkFl…/viewform

  9. 13. lis 2018.
  10. 18. ruj 2019.

    Shout out to the 350 million people worldwide living with a rare disease. Every single day gives us new chances to reach out to the amazing rare disease community, by offering patient groups training and support

  11. 14. kol 2019.

    We see some familiar faces! We wanna see more, known to us and unknown! We love meeting new advocates, patients, and NPOs!

  12. 12. kol 2018.

    Your mission if you choose to accept it: change your cover photo to this and share with ONE friend. Always encourage the folks in your life to share their stories.

  13. 8. stu 2017.

    What a fantastic example of why scientific funding is essential. A new life for a child.

  14. 1. ožu 2018.

    Sarah Lippett speaking about her experiences of rare diseases, expertly illustrated as always

  15. 2. kol 2017.

    We personally invite to join 13th - 20th August and reach a wider audience! Contact us for more info.

  16. 14. stu 2019.

    Individually rare but collectively common. Are you ?

  17. 2. pro 2017.

    Great to grab a with National Lottery Players they are making people across

  18. Happy to the Manton Center GCs and ! Thanks for all the work you do to facilitate rare disease research

  19. 21. sij

    About 50 percent of Niemann-Pick Disease Type (NPC) cases affect children before age 10. But some NPC patients, like Dee Reynolds of Northern Virginia, are not diagnosed until age 60.

  20. 5. lis 2017.

    We create many early detection campaigns for our clients. It’s vital we find ways to stop misdiagnosis and diagnosed, untreated.

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