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Gorlin Syndrome Group

Supporting patients, their families and carers
 
Registered Charity No: 1096361
Supporting patients, their families, friends and carers affected by Gorlin Syndrome
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Links and Resources

The links provide access to useful websites giving information on genetics and genetic education; skin cancer information, education, prevention and treatments; self help publications and literature; research education and resources; support networks; and welfare and benefits advice.

 
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.
Let's Face It is a 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.

CLAPA Cleft Lip and Palate Association - National Charity in the UK dedicated to supporting all those affected by cleft lip and/or palate.

UKSelfHelpDirectory of National UK Self Help Groups and Support organisations

BCCNS Life Support Network Support Group based in the US for those people affected by Gorlin Syndrome

Unique Rare Chromosone Disorder Support Group 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.

Carers UK Carers UK is the voice of carers. Carers provide unpaid care by looking after an ill, frail or disabled family member, friend or partner, and give so much to society yet as a consequence of caring, they experience ill health, poverty and discrimination.

The Princess royal Trust for Carers The Princess Royal Trust for Carers is the largest provider of comprehensive carers support services in the UK.

GIG A national alliance of patient support groups for all those affected by genetic conditions.  Useful source of information, expertise and support for all.
  • Includes a series of leaflets explaining about inherited conditions and has one about 'Dominant Inhertance' and a glossary of genetic terms together with a leaflet about possible questions to ask when considering genetic testing.
Rare Disease UK Launched November 2008. 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.
British Association of Dermatologists has a public access area which gives information about patient support groups and skin conditions. 

British Dental Association a public access area giving information about oral hygiene, common problems, treatments and cosmetic dentistry.

UK Dermatology Clinical Trials Network (UK DCTN)  is 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.

British Association of Obstetricians and Gynaecologists offers information for patients and their families about services and a frequently asked questions section.

Dermnetnz A useful Dermatology resource for patients and healthcare professionals giving extensive information about skin diseases, conditions and treatments the many asspects

British Skin Foundation The UK Charity dedicated to raising money for research into all skin diseases, their treatments, prevention and possible cures. 8 million people in the UK suffer from a skin disorder. To find out more visit the BSF website to access links about 'Staying safe in the sun' and the patient information area. 

Skin Care Campaign (SCC) An umbrella organisation representing the interests of all people with skin diseases in England.  The Skin Care Campaign website is a useful resource for anyone with an interest in dermatology.  The site provides details of support available for those affected by skin conditions and information about the Campaign's activities.

Skin Care Campaign Scotland (SCCS) An umbrella organisation representing the interests of people with skin diseases in Scotland.

Skin Care Campaign Cymru website currently under construction and coming shortly.

Skcin The Skcin Website offers vital information about Skin Cancer. Written by medical professionals specialising in all areas of skin cancer including detection, prevention, surgery and cure, this site offers a comprehensive one-stop interactive information point.

NHS National Library for Health website (NLH) is a modern, integrated, hybrid service that aims to be 'the best, most trusted health related knowledge service in the world'. It comprises NHS funded services across the country and, a digital hub, plus commissioned information services and products.

National Institute for Clinical Excellence (NICE) An independent organisation responsible for providing national guidance on treatments and care for those using the NHS in England and Wales. 

  • As a registered Stakeholder the Gorlin Syndrome Group has worked on various consultation guidelines representing the views of patients and carers.

British Society for Human Genetics (BSHG) An independent body representing UK human genetics professionals. This site may be of interest to readers.

Human Genetics Commission.  HGC The Government's independent advisory body on social and ethical issues in human genetics.   Information about their work can be accessed at

Intute is a free online service providing access to the very best Web resources for education and research. The service is created by a network of UK universities and partners. Subject specialists select and evaluate the websites in our database and write high quality descriptions of the resources.

The 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.

  • maintains a database of information on resources to support health professionals learning or teaching genetics. 

NHS Patient Advice and Liaison Serice (PALS) provides information and contact details for the Service throughout England

The North West Genetics Knowledge Park (Nowgen) is a centre of expertise in genetics in healthcare, which sets out to inform and improve the practice of genetic medicine.

Orphanet European database on rare diseases and orphan drugs, with an. encyclopedia covering over 1000 rare diseases. A directory of services in 20 European countries.

  • Information about support groups 

NHS24 Scotland the Scottish Support Group Directory is now live on the NHS24 website.  Also includes information and advice about many medical conditions and illnesses.
Written and produced by Professor P A Farndon, Clinical Geneticist at the National Genetics Education and Development Centre UK, Jim Costello (deceased) & Margaret Costello, unless otherwise stated.