Stickler Syndrome Support Group

P O Box 371
Walton on Thames
Surrey
KT12 2YS

Tel: 01932 267635
Web: www.stickler.org.uk
Best time to telephone: 10am - 4pm (answerphone also operates)

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?
  • 4 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 professions.
  • A booklet for 7 - 12 year old explaining Stickler syndrome.
  • A book "Sticker - The Elusive Syndrome".
  • A video "Stickler Syndrome Learning the Facts".