Stickler Syndrome Support Group

PO Box 3351
West Sussex
BN16 9GB

Tel: 01903 785771


Stickler syndrome is a genetic progressive condition which affects the body's collagen (connective tissue). There is a range of treatments and support available. The Stickler Syndrome Support Group (SSSG) is a registered charity and offers the following:

  • Raising awareness of Stickler syndrome amongst medical professionals and the general public.
  • Emphasising the value of early diagnosis for adults and children with the condition.
  • Stressing in SSSG literature, and to all professional and family contacts, that prompt treatment for retinal detachment and other eye problems associated with the condition can help to preserve vision.
  • Producing clear and accurate information about Stickler syndrome in print and on the above mentioned website.
  • Organising conferences, workshops and other events for affected families and for professionals who want to be informed about the condition.
  • Arranging publicity for medical professionals and for people with visual impairment or restricted mobility.
  • Encouraging membership of the SSSG - members receive copies of all new SSSG publications and newsletters. Also encouraging medical and other professionals to join the mailing list.
  • Helping to alleviate feelings of isolation and distress in affected individuals and families throughout the UK, especially when they are undergoing medical procedures related to Stickler syndrome.
  • Publications include:
    • Stickler syndrome, What is it? and How can we help?
    • 7 other booklets on various aspects of the condition.
    • A booklet for teachers and youth leaders who have a child with Stickler syndrome in their care.
    • A 40 Page booklet for the medical and healthcare professionals.
    • A booklet for 7 - 12 year old explaining Stickler syndrome.
    • A book "Sticker - The Elusive Syndrome".
    • A video "Stickler Syndrome Learning the Facts".
    • A video "Finding Hope - Living and Coping with Stickler Syndrome"

Last updated on 08/11/2013

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