Support Group based in the US for those people affected by Gorlin Syndrome
New resource for Gorlin Syndrome patients in Australia.
BTUK was founded in 1997, the charity has an impressive track record of providing practical and emotional support to brain tumour patients and their families and has a national network of grassroots supporters
UK charity that supports and represents people who have disfigurements of the face or body from any cause.
National Charity in the UK dedicated to supporting all those affected by cleft lip and/or palate.
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.
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.
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.
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.
Website offering dvice and information to individuals with rare and less common cancers or to their families and friends.
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.
British Association of Dermatologists
The British Association of Dermatologists has a public access area which gives information about patient support groups and skin conditions.
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.
A charity which helps parents and carers of disabled children and those with special needs to find solutions to practical problems of everday living. Product solutions for children’s special needs.
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.
British Society for Human Genetics (BSHG)
British Society for Human Genetics (BSHG) An independent body representing UK human genetics professionals. This site may be of interest to readers.
NHS National Genetics Department and Education Centre
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.
Comprehensive details for patients and healthcare professionals about genetic testing and research.
Weekly digest of news stories in the field of assisted reproduction and human genetics
British College of Obstetricians and Gynaecologists
Offers information for patients and their families about services and a frequently asked questions section.
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.
(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.
Rare Disease UK
A national UK alliance of patients, doctors, specialist researchers, health care planners, politicians and industry in pursuit of the shared goal of high qauality healthcare for paitents and families living with rare disease.
EU Public Health
Link to EU Public Health rare disease section
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.
Living with a long term condition and self care.
The Scottish Support Group Directory is now live on the NHS24 website. Also includes information and advice about many medical conditions and illnesses.
NHS Direct Wales
NHS Direct Wales website. Information and advice for people living in Wales.
Patient Advice and Liaison Service
British Red Cross
For people with scars or other disfiguring skin conditions, skin camouflage can offer a simple route to improved confidence and independence.
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.
View a wide variety of larger size hats for men, women and children.
Riding hats. A wide range of riding hats in all sizes giving full protection when horse riding.
Turbans and hats for women experiencing significant hair loss – alopecia, chemo hair loss, psoriasis, lupus or any medical condition that has hair loss symptoms.
Information about Sunsense sunscreens and staying safe in the sun.
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.