Support groups for disfigurement

There are lots of groups that can offer support, information and advice on specific conditions that can cause disfigurement. Below are some examples, but the list is by no means exhaustive.

Acoustic neuroma support

British Acoustic Neuroma Association (BANA)
BANA offers mutual support and information to people affected by acoustic neuroma.

Alopecia support

Alopecia UK
Alopecia UK provides information, advice and support for people with alopecia areata, alopecia totalis and alopecia universalis.

Bell's palsy support

Bell's Palsy Association
The only UK-registered charity dedicated solely to providing help and information to people with Bell's palsy.

Facial Palsy UK
Charity supporting people who are affected by facial paralysis.

Birthmark support

The Birthmark Support Group
A UK-based support group for anyone with a birthmark.

Body dysmorphic disorder support

The BDD Foundation
The foundation aims to increase awareness and understanding of body dysmorphia, and also helps people to overcome the disorder.

Anxiety UK
The largest charity dealing with anxiety disorders.

Burns support

The Children's Burns Trust
The Children's Burns Trust is committed to providing support for burn- and scald-injured children and their families.

Cancer support

Macmillan
Expert information about all types of cancer, with cancer information specialist nurses who can answer questions by phone or email.

Cleft lip and palate support

Cleft Lip & Palate Association (CLAPA)
CLAPA is the only UK-wide voluntary organisation specifically helping those with, and affected by, cleft lip and palate.

Craniofacial conditions support

Headlines
Support for those affected by craniosynostosis and associated conditions.

The Craniofacial Society
A society for the study of cleft lip and palate and other craniofacial anomalies.

Disfigurement support

Changing Faces
Support for people who have disfigurements of the face or body from any cause.

Eczema support

National Eczema Society
A patient support organisation offering help and information to everyone affected by eczema.

Eczema Voice discussion board
A site where people with eczema and their carers can share experiences and read other people's stories.

Epidermolysis bullosa support

DEBRA
A UK charity for people with the genetic skin blistering condition epidermolysis bullosa (EB).

Goldenhar syndrome support

Goldenhar Family Support Group (UK)
Support for families of people with Goldenhar syndrome and related problems.

Ichthyosis support

Ichthyosis Support Group
A network of parents, medics and people with or affected by ichthyosis.

Limb loss support

Limbless Association
Information, advice and support for people without one or more limbs.

Neurofibromatosis support

The Neuro Foundation
Help, support and advice for those affected by either form of neurofibromatosis and their families.

Pituitary disorders support

The Pituitary Foundation
Support and information for pituitary patients, their families, friends and carers. Campaigns to increase public awareness of pituitary disorders.

Post-traumatic stress disorder support

The United Kingdom Psychological Trauma Society (UKPTS)
Information for the general public and health professionals about post-traumatic stress.

Proteus syndrome support

Proteus Family Network
A UK support group for families and individuals affected by Proteus syndrome.

Psoriasis support

Psoriasis Help Organisation (PHO)
Help for people with the chronic skin disease psoriasis.

Retinoblastoma support

Childhood Eye Cancer Trust (CHECT)
A UK-wide charity for families and individuals affected by retinoblastoma.

Scarring support

The Scar Information Service
Providing information on scarring, scar therapies and support organisations.

Stickler syndrome support

Stickler Syndrome Support Group
Information for families, healthcare and medical professionals affected by, or caring for, people with Stickler syndrome.

Sturge-Weber syndrome support

Sturge-Weber Foundation
Support and information on different aspects of Sturge-Weber syndrome, a rare neurological disorder.

Treacher Collins syndrome support

Treacher Collins Family Support Group
Support, advice and friendship for people with Treacher Collins syndrome and their families.

Vitiligo support

The Vitiligo Society
Support for people with vitiligo and their families in the UK and the Republic of Ireland.

Xeroderma pigmentosum (XP) support

XP Support Group
Support for people with XP and other related conditions, and their families.

Page last reviewed: 02/10/2014

Next review due: 02/10/2016

Ratings

How helpful is this page?

Average rating

Based on 1 ratings

All ratings

Add your rating

Comments

Services near you

Find addresses, phone numbers and websites for services near you

Moodzone: Low confidence and assertiveness

Dr Chris Williams gives you tips to help build your confidence. This podcast is one of an eight-part series for Moodzone.

Media last reviewed: 14/02/2013

Next review due: 14/02/2015

Sue Morgan-Elphick with her children

'My new life after face surgery'

Sue Morgan-Elphick talks about growing up with a facial disfigurement and how surgery changed her life

Changing Faces awareness campaign poster

Facial disfigurement: coping strategies

Coping strategies for people with a disfigurement, including building confidence and handling questions, comments and stares

Victoria Wright

'Cherubism and me'

Victoria Wright talks about life with a facial disfigurement. Being called names made her determined to stand up for herself.

The nurse who looks after your looks

Thousands of patients have benefited from Daren Edwards' skill in his 30 years' service to the NHS