Rezultati pretraživanja
  1. prije 8 sati

    Leukodystrophy Australia are just one of many rare diseases. There are over 100 types of Leukodystrophy. We need your help raising awareness and making some noise for Leukodystrophy and rare disease.

  2. prije 11 sati

    Molly’s Kids: Ella McKee’s brain is disappearing

  3. prije 13 sati

    Children's Hospice fundraiser in memory of Noah

    1 korisnik označava da mu se sviđa
  4. 4. velj

    𝐑𝐀𝐑𝐄 𝐈𝐒 𝐌𝐀𝐍𝐘! Did you know there are over 300 million with a rare disease? Let’s rise up, spread the word and get involved in this years Rare Disease Day on 29th February.

  5. 3. velj

    What advice would you give to parents whose child has just been diagnosed with ALD?

    1 korisnik označava da mu se sviđa
  6. 3. velj

    The countdown is on for February 29, Rare Disease Day. We need your help raising awareness and money for Leukodystrophy. We hope you’ll get involved! Leukodystrophy Australia is co-ordinating two activities.

    1 korisnik označava da mu se sviđa
  7. 2. velj
    Odgovor korisnicima

    We have a disabled daughter who requires more attention and money than most & funds are always tight, especially for the non-essentials.

    1 korisnik označava da mu se sviđa
  8. 1. velj

    Rare Disease Day takes place on the last day of February each year to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. Please visit our FB page for how we can get involved.

  9. 1. velj

    for the many opportunities afforded to those in need. My daughter was invited to the Las Vegas family . She had an amazing night. – mjesto: Las Vegas Ice Center

  10. 1. velj

    𝐑𝐚𝐫𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐃𝐚𝐲 𝟐𝟗𝐭𝐡 𝐅𝐞𝐛𝐫𝐮𝐚𝐫𝐲 It's time to show support for the individuals and families affected by a rare disease and help raise awareness. Please visit our FB page for how we can get involved.

    1 korisnik označava da mu se sviđa
  11. 31. sij

    Please consider donating to my older nephew’s Go Fund Me as he’s going to be having spinal fusion surgery. Thank you.

    2 proslijeđena tweeta 3 korisnika označavaju da im se sviđa
  12. 30. sij

    Successful Umbilical Cord Blood Stem Cell Transplantation for Pelizaeus Marzbacher Leukodystrophy - ScienceDirect

    9 korisnika označava da im se sviđa
  13. 29. sij

    Meet Rebekah (7/15/18-12/5/19) Isn't she beautiful! She recently joined our Wall of . Her lives in South Africa. She had . To see our Wall of Fame, visit:

    1 proslijeđeni tweet 4 korisnika označavaju da im se sviđa
  14. 29. sij

    How to help the healthy siblings of your ill child: Does your seriously ill child have healthy brothers & sisters? These children may also need help too, but often don’t know how to ask for it.

  15. 29. sij

    We our - Thank you minecraftily_mad you are a . Visit our website to to make a real difference. . . …

  16. 9. sij

    Sam's list of people he loves. came in first, his friends second and family a distant 3rd. 😂

    47 proslijeđenih tweetova 118 korisnika označava da im se sviđa
  17. 20. stu 2019.

    Thank you , ⁦⁩, , , and others for getting up early in the morning to meet pre ! Collaboration across the community is essential to making progress and we are making it happen!

    3 proslijeđena tweeta 9 korisnika označava da im se sviđa
  18. 1. stu 2019.

    . knows she won’t be able to save her daughter Cal, who was diagnosed with the . To make sure other children’s stories are different, she founded the

    Maria Kefalas knows that she won’t be able to save her daughter Cal, but she still fights to find a cure so that other children’s stories will be different.
    1 reply 8 proslijeđenih tweetova 33 korisnika označavaju da im se sviđa
  19. 24. lis 2019.

    I published an article about my daughter, who is disabled: But really, my wife's blog about what it's like to be her mom is better:

    1 reply 1 proslijeđeni tweet 14 korisnika označava da im se sviđa
  20. 13. ruj 2019.

    September is month and as leaders in the Global Leukodystropy Initiative, we are standing with other global leaders in hopes of creating a world without . Stay tuned for additional information about our Leukodystrophy Center.

    7 proslijeđenih tweetova 8 korisnika označava da im se sviđa

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