Rezultati pretraživanja
  1. Hemophilia is an inherited bleeding disorder. Patients living with hemophilia, lack low levels of certain proteins called “clotting factors” due to which the blood does not clot properly.

  2. prije 45 minuta
  3. “Having multiple illnesses is a full-time job you never get a break or get to take a vacation from. You can spend every waking minute managing your illnesses, staying on top of them…it’s so exhausting.”

  4. prije 9 sati
  5. Day 5: Aortic Anuerysms and other undiagnosed heart problems can be fatal. About half of 1200 people suspected with Marfan Syndrome don't know they have the condition. 600 people in Ireland at risk. Please Share and Like to help save a life.

  6. My baby was diagnosed with She is only 6 & spent 5 of those years getting me through the hardest time in my life; my accident & journey Hardest part=this AM I woke up w her pouncing on my face wanting to play

  7. Are you satisfied with the healthcare you receive for your ? Do you think your healthcare is well organised? Share your views via the new H-CARE Survey:

  8. prije 23 sata

    Advocating for , seeing the expression on people's faces when I tell our story of how my boys are living with the condition and flourishing in the face of the in a clime like Nigeria is the best feeling in the world.

  9. 4. velj
    Odgovor korisnicima

    Right, Hugh. Worth emphasizing that all 4 randomized trials were conducted in China. The congenital cataracts one was small, multi-center in a condition

  10. 4. velj

    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

  11. 4. velj

    Today we acknowledge all our patient organisations that support people affected by rare cancers. See them here:

  12. 4. velj

    Results from the latest Voices survey -According to patients, the main risks associated with data sharing are:

  13. 3. velj

    “If we can work with these groups to figure out the model — then anyone can do this.” - on ’s efforts to build a model for patient-led groups to make progress on . Read more in

  14. 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

  15. 2. velj
  16. 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

  17. 1. velj
  18. 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.

  19. 1. velj

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

Čini se da učitavanje traje već neko vrijeme.

Twitter je možda preopterećen ili ima kratkotrajnih poteškoća u radu. Pokušajte ponovno ili potražite dodatne informacije u odjeljku Status Twittera.