UK Support Groups

Support groups focused on the United Kingdom. Please also visit dsdguidelines.org for many specific suggestions in the "Clinical Guidelines for Management of Disorders of Sex Development in Childhood" and accompanying "Handbook for Parents" (both free online!)

Adrenal Hyperplasia Network

“The Adrenal Hyperplasia Network UK has been set up to provide support for all ages with Congenital Adrenal Hyperplasia (CAH), particularly adults and teenagers.”

AIS Support Group

“We are an international support group providing information and support to young people and adults with complete and partial Androgen Insensitivity Syndrome, and to parents of AIS youngsters. We also support those affected by Swyer’s syndrome (XY gonadal dysgenesis), 5 alpha reductase deficiency, Leydig Cell Hypoplasia, Mayer-Rokitansky-Kuster-Hauser (MRKH) syndrome, Mullerian dysgenesis, Mullerian duct aplasia, vaginal atresia, and other related conditions.”

Excellent resources at this site, even if you don’t have one of the conditions or gender identities that they address. See their website for chapters around the world, including US and Canada. There’s a search box at the bottom of the home page.

Anorchidism Support Group

Classification: Anorchidism | UK Support Groups

“The Anorchidism Support Group is based in England, and was formed on July 7th 1995 to serve and support any person, or families of boy’s, with congenital (or acquired) absence of the testes. We provide a means of networking with affected families as well as education and information. This condition can be known by several different names, please use the link to see some of the other terms used for this condition.”

“ASG has members not only here in the UK but also in America, Australia, New Zealand, Egypt, Israel, Ireland, Luxemburg, & Italy to name just a few, we also have been contacted by families in several other country’s around the world. We also offer to provide assistance to families of children with undescended testes.”

Climb CAH UK SUPPORT GROUP

"This web page is a support / information site for parents, families and carers of people with CAH as well as for CAH sufferers themselves."

HypoHH

HYPOHH.net is the official web site for HYPOHH, the patient support organisation for people with one of a specific group of rare hormonal diseases called hypogonadotrophic hypogonadism.

Hypospadias Support Group (UK)

Classification: Hypospadias | UK Support Groups

A UK-based discussion group for hypospadias (registration required, but free of charge).

Klinefelter Organization (UK)

A UK based support organization for Klinefelter Syndrome (XXY, XXXY, XXXXY, XXYY).

Klinefelter Syndrome Association UK

The KSA has been supporting people in the UK with Klinefelter’s Syndrome (KS), and their families and friends, since 1990. Our members are about as diverse as in any other support group; as well as those with Klinefelter’s Syndrome themselves, we have parents, grandparents, wives, brothers, sisters, carers and friends.

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