Androgen Insensitivity Syndrome Support Group Website
(If you came to this page directly, please go to our entry page by clicking here.)

Androgen Insensitivity Syndrome
Support Group (AISSG)

[this page last updated 19 Oct 2004]

UK Group
Registered UK Charity No. 1073297
Affiliated to Contact a Family, Rare Disorders Alliance-UK,
Genetic Interest Group (GIG), Long Term Medical Conditions Alliance and
International Alliance of Patients' Organizations (IAPO)
US Group
Registered IRS [501(c)3 Organization] No. 37-1407648
Canadian Group
Charitable Business No. 88977 6142 RR0001
Spanish Group
Fiscal Identification (C.I.F.) G63220958

Before meeting others affected....
(Picasso - 'On the Beach')

.... After meeting, and much talking
(Picasso - 'Three Bathers')

The Androgen Insensitivity Syndrome Support Group (AISSG) is a consortium of worldwide support groups that owe their origins to the UK-based group which was started in 1988 (formalised in 1993).

We provide information and support to young people, adults and families affected by complete and partial Androgen Insensitivity Syndrome (AIS) - old name Testicular Feminization Syndrome or Testicular Feminisation Syndrome (TFS). 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.

Aims of the Group

The AIS Support Group has the following aims:

To reduce the secrecy, stigma and taboo that has existed around AIS and other intersex conditions, by encouraging doctors, parents and society to be more open.
To encourage the provision of psychological support within the medical system, for young people with AIS and their parents.
To put parents and people with AIS in touch with others and to encourage them to seek support and information.
To increase the availability of information on AIS both verbal (from the health professionals) and written (from the support group and other sources).
To encourage improvements in treatment for vaginal hypoplasia, and research into why the extent of vaginal development can vary in AIS.
To encourage retrospective studies on genital surgery, so as to evaluate whether it is an effective treatment for the patient.

Literature and Group Meetings

The UK group started developing literature in 1993. This comprises a factsheet/brochure (in several languages) and a journal/newsletter (A^LI^AS - Looking At AIS ) since 1995, current issue free to subscribers to the UK group (see Literature). A sample newsletter (A^LI^AS No. 6) can be viewed/printed from this web site at no charge. Some of the more established groups (e.g. UK, USA, Canada, Germany, Holland and Spain) hold regular group meetings. See Group Meetings.

Where to Go from Here?

You can click on any of the links on the left to navigate the site but here is a suggested action plan:

1. Download some documents to read later:
a) Basic Information Document (31 Kb)
b) AIS Factsheet (16 Kb)
c) Sample Newsletter (1183 Kb)

2. Start exploring the rest of the site:
a) For an introduction to the site, go to About this Site.
b) For medical details about AIS, start with What is AIS? and move on to other pages.
c) Don't forget to check out the Personal Stories page.
d) For details of the various national groups, see How to Contact Us.

"Never doubt that a small group of thoughtful, committed people can change the world.
Indeed it is the only thing that ever has."
Margaret Mead (anthropologist)