Stickler Syndrome Support Group

PO Box 3351
Rustington
Littlehampton
West Sussex
BN16 9GB

Tel: 01903 785771

Web: www.stickler.org.uk

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

Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical conditions. Patient Platform Limited has used all reasonable care in compiling the information but make no warranty as to its accuracy. Consult a doctor or other health care professional for diagnosis and treatment of medical conditions. For details see our conditions.