Condition-specific
support groups
The following links to support groups and organisations provide information and advice about conditions and their management as well as offering support.
Acoustic Neuroma
British Acoustic Neuroma Association
Allergies
Alopecia
Action against Alopecia
Tel: 01323 412 723
Bells Palsy
Birthmarks
Body Dysmorphophobia
Burns
B U G S (Burns Unit support Group)
The Children's Fire and Burn Trust
The Burns Support Group Database
Cancer (all types)
Cleft Lip and Palate
CLAPA (UK) and Left Clip (a forum for young people who have a cleft lip/palate)
Cleft Lip and Palate Association (Northern Ireland)
Craniofacial Conditions
Craniofacial Society of Great Britain
Cystic Hygroma and Lymphangioma
Cystic Hygroma and Lymphangioma Support Group
Tel: 01444 461 155 or 0113 236 1084
Eczema
Epidermolysis Bullosa
Goldenhar Syndrome
Gorlin Syndrome
Hirsutism
The Face Institute, the Hirsutism Society and the Polycystic Ovary Syndrome Association
Tel: 01223 440 327
Ichthyosis
Limb Loss (including fingers and thumbs, hands, arms, toes, feet, legs)
Reach
Tel: 0845 130 6225
Nager Syndrome: NaSA
For support group details call:
Tel: 0161 643 9186
Neurofibromatosis
Pituitary Disorders
Post Traumatic Stress Disorder
For information about the treatment and management of PTSD visit: www.uktrauma.org.uk
Proteus Syndrome
Psoriasis
Retinoblastoma
Childhood Eye Cancer Trust (CHECT) formerly the Retinoblastoma Society
www.rbsociety.org.uk
www.chect.org.uk
Scarring
Stickler Syndrome
Stickler Syndrome Support Group
Sturge Weber Syndrome
Treacher Collins Syndrome
Treacher Collins Syndrome Support Group
Vitiligo
Xeroderma Pigmentosum (XP)
Can't find a support group or organisation for your condition?
If you want to find out more about a condition but a support group is not listed, the following organisations and websites may be of use:
Contact a Family offer a freephone helpline for parents of children with a disability or medical condition. The organisation's information on disabilities and medical conditions is produced by doctors and paediatricians specifically for parents and families.
It also puts families in touch on a one-to-one basis which can be particularly helpful for families caring for a child with a rare condition for which no support network exists.
The national helpline number is 0808 808 3555.
Opening hours are 10:00am - 4:00pm, Monday to Friday
www.self-help.org.uk
to find out more about a medical condition
www.healthfinder.gov
to find out more about a medical condition
If your child has a condition or a number of symptoms that cannot be identified, a support group called Syndromes Without a Name (SWAN) can offer information and advice. Visit them at www.undiagnosed.org.uk
Worldwide Condition-Specific Groups and Organisations
Acoustic Neuroma Association (USA)
The Phoenix Society for Burn Survivors
World Craniofacial Foundation (based in Texas)
