Additional Support
Other Support Groups
Gorln Syndrome Alliance
Support Group based in the US for those people affected by Gorlin Syndrome
Australian Gorlin Syndrome Mutual Support Group
New resource for Gorlin Syndrome patients in Australia.
General Support
The Patients Association
The Patients Association is a national healthcare charity and is nearly 50 years old. They exist to help any patient in the United Kingdom with advice and information on how to get the best out of healthcare.
Fledgings
A charity which helps parents and carers of disabled children and those with special needs to find solutions to practical problems of everyday living. Product solutions for children’s special needs.
National Voices
(Previously Long Term Conditions Alliance) is the new umbrella organisation established by and for the voluntary sector. It brings together all national voluntary organisations representing users of health and social care to give them a stronger voice in policy-making.
Independent Parental Special Educational Advice
IPSEA is a national charity providing free legally based advice to families who have children with special educational needs. All our advice is given by trained volunteers.
Rare Disease UK
A national UK alliance of patients, doctors, specialist researchers, healthcare planners, politicians and industry in pursuit of the shared goal of high-quality healthcare for patients and families living with rare diseases.
Genetics
The British Society for Genetic Medicine (BSGM)
An independent body representing UK human genetics professionals. This site may be of interest to readers.
Unique
UK based charity offering information and support to families and individuals affected by any rare chromosome disorder and to the professionals who work with them.
BioNews
Weekly digest of news stories in the field of assisted reproduction and human genetics.
Genetics Alliance UK
A national alliance of patient support groups for all those affected by genetic conditions. Useful source of information, expertise and support for all.
HEE Genomics Education Programme
Works with a range of groups throughout the UK to facilitate the integration of genetics education into all levels of education and training for all NHS health professionals.
Skincare
Changing Faces
UK charity that supports and represents people who have disfigurements of the face or body from any cause.
CLAPA
National Charity in the UK dedicated to supporting all those affected by cleft lip and/or palate.
Let’s Face It
Support network for the facially disfigured to enable them to share their experiences and support and help one another by passing on information and advice on ways to cope with individual problems.
British Association of Dermatologists
The British Association of Dermatologists has a public access area which gives information about patient support groups and skin conditions.
Dermnetnz
A useful Dermatology resource for patients and healthcare professionals giving extensive information about skin diseases, conditions and treatments the many aspects
European Academy of Dermatology and Venereology
The leading professional organisation for Dermatology and Venereology. A patient corner is included on the website.
The Whittington Hospital NHS Trust
The Whittington Hospital NHS Trust, Dermatology Department. Information on skin conditions and treatments. Also included is a patient information leaflet explaining Photodynamic Therapy.
Skin Care Cymru
Skin Care Cymru is a voluntary charity promoting the cause of Dermatology patients on committees, panel and forums in Wales and the UK.
British Red Cross
For people with scars or other disfiguring skin conditions, skin camouflage can offer a simple route to improved confidence and independence.
Uvistat
Advice about how to keep you and your family safe in the sun and to get the latest news on sun protection as well as information on the latest and best products in the market.
British Association of Skin Camouflage
British Association of Skin Camouflage offers advice and assistance on camouflage products and application.
British Skin Foundation
UK Charity dedicated to raising money for research into all skin diseases, their treatments, prevention and possible cures. Useful patient area about ‘Staying safe in the sun’.
UK Dermatology Clinical Trials Network (UK DCTN)
Open to anyone (medical staff and patients/ carers) with an interest in dermatology research. Gives information about trials that are on-going, those in development and the results of completed studies.
Hats
Riding Hats
Riding hats. A wide range of riding hats in all sizes giving full protection when horse riding.
Get Ahead Hats
Hats for a special occasion. For hire or purchase. Visit the on-line store which gives full details of showrooms across the country.
Surburban Turbun
Turbans and hats for women experiencing significant hair loss – alopecia, chemo hair loss, psoriasis, lupus or any medical condition that has hair loss symptoms.
Cancer Support
Macmillan Cancer Support
Psychological counselling is not commonly offered on diagnosis or even later on. Practical, medical, emotional and financial support is available. You can also speak to your GP or Consultant.
Rarer Cancers Forum
Website offering advice and information to individuals with rare and less common cancers or to their families and friends.
Other
British Dental Association
Counselling Directory
The Counselling Directory provides the UK with a huge counselling support network, enabling those in distress to find a counsellor close to them and appropriate for their needs. This is a free, confidential service that will hopefully encourage those in distress to seek help.
Royal College of Obstetricians and Gynaecologists
Offers information for patients and their families about services and a frequently asked questions section.