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  1. prije 51 minutu

    Come and chat with the TREAT-NMD representatives at the 2020 Conference in Evry for information on how we can support the neuromuscular community

    2 korisnika označavaju da im se sviđa
  2. prije 1 sat
    Odgovor korisniku/ci

    We know. I have 3 CVID,Keinbock,Presiers & brittle bones. I depend on life saving monthly. I will die without them. Let me know so I can prepare to die.

  3. prije 1 sat

    We fully pledge our support to the patients and families of Rare Disease. We will continue to support and advocate for the implementation of the National Rare Disease Plan.

    - Signs & symptoms of 70% of rare diseases appear exclusively in childhood. At least 4% of children are diagnosed with a by age 17. are chronic, progressive, degenerative and often life-threatening.
  4. prije 2 sata
    Odgovor korisniku/ci

    Thank you! Interesting fact I just found out in my research No chemotherapy drug for cats is approved If she is a candidate for treatment it will be off-label just like her mom 😀 They only have approved treatments for dogs

    1 reply
  5. prije 2 sata

    “Prepare for your daughter to die very soon,” the doctor told them.

  6. prije 3 sata

    Answer: According to , to be classified as a , the condition must impact 200,000 people or less.

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  7. prije 3 sata

    This significant contribution by Viralgen will go a long way to provide access to AAV manufacturing in order accelerate programs for ultra-rare diseases which has been a significant bottleneck in gene therapy.

  8. prije 4 sata

    What exactly is Adrenoleukodystrophy (ALD)? ALD is a rare genetic condition that’s passed from parent to child, here we explain more about the condition:

  9. prije 5 sati

    we have the amazing friends that send us updates new groups research etc and giving us hope that research is out there trying to cure LGS and all epilepsy 💜

  10. prije 7 sati

    Do other conditions have symptoms like ?

    2 korisnika označavaju da im se sviđa
  11. prije 20 sati

    Remember to define your research goals when embarking on a natural history study.

    2 proslijeđena tweeta 7 korisnika označava da im se sviđa
  12. prije 22 sata

    . supports development of research and therapies for children and young adults fighting fibrolamellar carcinoma, a rare liver cancer. Learn about the 30 patient-led groups working to find treatments for their

    1 reply 16 proslijeđenih tweetova 54 korisnika označavaju da im se sviđa
  13. prije 23 sata

    Keys to a good partnership framework.

    6 korisnika označava da im se sviđa
  14. prije 23 sata

    When Micah died just before his 1st bday from complications of necrotizing enterocolitis, not a single NEC charity existed in the 🌎. Micah & babies just like him compel me to do everything I can to help advance research so we can build a 🌎 without this devastating

    NEC is a multifactorial intestinal disease that affects thousands of premature & medically fragile infants every year. Through the Network, the will build a patient-led research collaborative so we can !
    4 proslijeđena tweeta 28 korisnika označava da im se sviđa
  15. 3. velj

    We’re excited to announce 30 grantees to our Network. These patient-led organizations are partnering with clinicians and researchers to accelerate research for their

    38 proslijeđenih tweetova 142 korisnika označavaju da im se sviđa
  16. 3. velj

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

    3 proslijeđena tweeta 3 korisnika označavaju da im se sviđa
  17. 2. velj

    Have you seen the campaign yet? If not, check out:

    18 proslijeđenih tweetova 27 korisnika označava da im se sviđa
  18. 2. velj

    “It’s hard to explain the disease and its complexity to your physicians/physiotherapists over and over again… and then explaining to our society what it is… It can feel so lonely. No one knows anything about it.” What It’s Like to Have a

    16 proslijeđenih tweetova 38 korisnika označava da im se sviđa
  19. 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.

    3 proslijeđena tweeta 9 korisnika označava da im se sviđa
  20. 1. velj

    Just when you summit one mountain, you realize there are many more.

    1 reply 7 proslijeđenih tweetova 22 korisnika označavaju da im se sviđa

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