Ataxia-telangiectasia
Forum

Current topics:

• - How were you diagnosed with a rare disease?
  Hello everyone, How are you doing? I thought I'd create this discussion to talk about being diagnosed with a rare disease! For some it can be a long, arduous process, and for others it can go quickly
• - Living with Usher syndrome: Share your experience!
  Hello, am new here. I have usher syndrome and have been registered blind for quite a few years. Also have glaucoma which has closed down one eye and affected central vision in other eye.  I manage q

Current topics:

• - Doctorate Thesis-Online study about Chronic Pain & Stigma
  UPDATE: Thank you everyone who participated, and for permission to post originally-the questionnaire has now closed, and I am blown away by the response. Many thanks! Anyone who entered the prize draw
• - Falling down stairs
  I have suffered with dystonia since birth and it has got worse over the years, for the last few weeks as I am trying to gondown the stairs my leg tries to make me fall down the stairs, I'm wondering
• - Arnold Chiari Malformation
  Hi, I was diagnosed with Arnold Chiari Malformation Type1 June 2006. This is a rare condition of the brain. I am still learning about this condition as nothing was ever explained to me by my neurologi