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Informatie in het Nederlands
Informacje po Polsku
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This section provides direct links to other web sites that may be of interest.
Please notify us at AISSG UK of any missing/broken links on this page (supplying a working link wherever possible). Thank you.
Select the type of web site you are interested in:
(Links reviewed 11/12/06)
Complete Androgen Insensitivity Syndrome. PDF versions of a 28-page parent/patient booklet on CAIS published in 1997 by Dr. Garry Warne, a paediatric endocrinologist in Australia, with help from the UK AIS Support Group. There's an English version, a French version (translated by French member of the UK group), a German version (translated by member of our German sister group XY-Frauen) and a Spanish version. To obtain a professionally printed and bound copy of the English version (to give to relatives, patients etc.) see our Literature page.
Patient information leaflets on CAIS and PAIS. Inspired by "Nick's Notes" written by retired paediatrician Dr. Nick Barnes on web site of British Society for Paediatric Endocrinology and Diabetes (BSPED).
NHS Choices: Androgen Insensitivity Syndrome. Pages covering AIS on the UK's NHS Choices website.
Orphanet. An online resource aiming to improve the diagnosis, care and treatment of patients with rare conditions (sometimes known as "orphan conditions"). Lists relevant support groups, specialist clinics, testing laboratories, research projects etc. The visitor is then guided to services in their country of interest. The project began in France in 1997. Since then, 19 other countries have joined, with the UK being one of the most recent additions. Orphanet UK forms part of the European Projects Office in the North West Genetics Knowledge Park (Nowgen) in Manchester. We liaised with Nowgen to improve the rather outdated coverage of AIS on the Orphanet site.
British Paediatric Surveillance Unit. Information about completed BPSU studies (select the 'Androgen Insensitivity Syndrome' link). The BPSU, part of the Royal College of Paediatrics, was set up in July 1986, enabling paediatricians to participate in the surveillance and further study of uncommon disorders affecting children.
Androgen Insensitivity Syndrome by Bruce E. Wilson. An online 'eMedicine' monograph/review of current knowledge/treatment.
GeneClinics. Detailed medical information on AIS by Prof. Leonard Pinsky, an AIS genetic expert in Canada.
Androgen Receptor Mutations Database. A database maintained by McGill University, Canada, of all known mutations in the androgen receptor gene. But "Don't get too excited [about this site]" said one group member. See also 'Endocrine Online', under Endocrinology/HRT Sites on this page, for another link to androgen receptor mutation database.
Nat. Lib. of Med. Info. on AIS. Page giving heavy-duty medical info on AIS. Typical medical approach, completely ignoring (at time of adding this link) the psychosocial/psychosexual aspects and truth-disclosure/counselling issues etc.
47XXY AIS. Most people with AIS have a 46XY chromosome configuration but there is an even rarer form in which the person is 47XXY. Click on the link entitled "Gerli et al" in the second paragraph (once you're at the site) to read articles about 47XXY AIS. Is this really a form of Klinefelter's Syndrome (see Klinefelter's Syndrome)?
Note: Vaginal agenesis/hypoplasia is a feature shared by AIS (and some other XY conditions) and some XX conditions such as MRKH. Some information on this aspect of MRKH will be found under Similar/Related Conditions below. For links to companies that make/sell vaginal dilators see Gynaecology Sites on this page.
(MRKH links reviewed 11/12/06)
Women with MRKH are XX females with ovaries but a lack of vaginal, and often uterine development. There seems to be some overlap with conditions known as Mullerian (duct) dysgenesis/aplasia and MURCS. They may be the same thing?
Living MRKH. A UK support group for MRKH.
ROSA Group. A UK support group for MRKH. Email: email@example.com [May not be operating now]
MRKH. A UK resource run under the auspices of the snappily titled 'National Centre for Adolescent and Adult Females with Congenial Abnormalities of the Genital Tract' at Queen Charlotte's and Chelsea Hospital, London. The centre receives central government funding to treat XY-female intersex conditions like AIS (as well as XX-female conditions like MRKH) but it seems to push intersex under the carpet with a history of non-disclosure to XY-female patients who have been led to believe they have a 'not-quite-so-taboo' condition like MRKH (see Announcements).
MRKH Foundation. A US non-profit making foundation dedicated to raising international awareness, providing financial assistance, and furthering research into MRKH. [Is this the organisation that used to be at www.mrkh.net?]
MRKH Organisation. A US organisation dedicated to raising public awareness, consulting with doctors, and providing information and a place for MRKH women to network about their activities.
Care and Counseling of the Patient with Vaginal Agenesis. Article (1992) by Sallie Foley and George Morley.
An Additional Monologue. Article by the MRKH woman who founded the MRKH Organisation (above) about her experience with vaginal agenesis (title is a reference to "The Vagina Monologues", a stage play/event by Eve Ensler, see 'Gynaecology Sites' elsewhere on this page). The article can also be accessed via the MRKH Organisation site (see above). Published in hardcopy form as Missing Vagina Monologue, by Esther (Marguerite) Morris, in Sojourner (The Women's Forum), Vol 26, No. 7, March 2001.
Mayer Rokitansky Kuster Hauser (MRKH) Syndrome. US-based information and an on-line listserv.
Boston Young Women's Health. Information on vaginal agenesis.
Your Child With Congenital Adrenal Hyperplasia. An online version of Dr. Garry Warne's CAH booklet.
CLIMB. UK organisation founded in 1981 as The Research Trust for Metabolic Diseases in Children (now called Children Living with Inherited MetaBolic Diseases). It is the only charity in the UK encompassing all metabolic diseases and has international links throughout the world.
CLIMB CAH Support Group. A UK support group for congenital adrenal hyperplasia. Run under the auspices of CLIMB (see above). Mostly for parents.
Adrenal Hyperplasia Network (AHN). A network for CAH teens/adults founded and run by the CAH adult support co-ordinator of the CLIMB CAH Group (see above).
The Turner Society. A site for the UK Turner Society.
The Turner Syndrome Society of the US. Also gives contact details for other international branches.
Mixed Gonadal Dysgenesis
Mixed Gonadal Dysgenesis Support Group. A group that aims to provide parents with the information and contacts they need to make the difficult decisions faced in raising their children with XY/XO Mosaicism.
Hypogonadotrophic Hypogonadism. Support group that also covers Kallman's Syndrome. Lack of hormones at puberty leading to infertility, osteoporosis and restricted sexual development. Their site has a Patient Support Page (a selection of links to patient support groups around the world).
Klinefelter Organisation. For UK information/support.
Klinefelter's Syndrome Association. For UK information/support.
Klinefelter Syndrome and Associates. A US-based support organisation.
American Association of Klinefelter Syndrome Information Support (AAKSIS). A US-based support organisation.
Klinefelter Syndrome 47XXY. Information on Klinefelter 47XXY research carried out by Dr. Jay Giedd, Child Psychiatry Unit, Nat. Inst. of Med. Health, Canada.
XXY Information. Klinefelter Syndrome information.
De Nederlandse Klinefelter Vereniging (NKV). Dutch Klinefelter organisation.
Anorchidism Support Group. A UK-based group founded in 1995 to support families/individuals affected by congenital or acquired absence of the testes in boys.
Hypospadias Support Group. A UK-based group.
International Society on Hypospadias and Intersex Disorders (ISHID). Formed in 1999 during a conference in New Delhi, India, with subsequent conferences being held in New Delhi (2001), Istanbul (2005) and Rome (2007).
Bladder Extrophy Support Group. US-based group for parents and people with bladder extrophy.
Daisy Network. A premature menopause support group for childless women, formerly called Daisy Chain.
Early Ovarian Failure Support Group. [Link needed] A UK-based support group. PO Box 230, Barnet, EN5 2BF.
Polycystic Ovary Syndrome
PCOS (Polycystic Ovary Syndrome). A UK-based organisation.
(Links reviewed 11/12/06)
University College London Hospital (UCLH), Adult Intersex Clinic. The web page for The Middlesex Centre, the name of the multi-disciplinary clinic that was set up in the mid 1990s in consultation with AISSG UK and at which many members of the support group are treated. The centre/clinic is named after the old Middlesex Hospital, just down the road (now demolished), where these clinical services started out.
Leeds Teaching Hospitals. Leeds is the other main hospital with which AISSG UK has had links regarding muti-disciplinary care.
Scottish DSD Network (SDSD). Used to be called Scottish Genital Anomalies Network (SGAN). Unlike the rest of the UK, Scotland has a centrally managed service for the care of intersex babies. All babies are seen at one of two hospitals where multidisciplinary teams will link up. The service receives central government funding specifically targetted to intersex medicine, and in particular to aid the development of a national database. All babies born in Scotland with a genital anomaly are entered into a database and followed up prospectively.
Netzwerk Intersexualitšt and Kinderklinik Lübeck. Set up by clinicians in N. Germany (who work closely with our sister group XY-Frauen) to promote inter-disciplinary studies and co-operation in the intersex field. A number of networks have been funded by the German Ministry of Education and Science (BMBF) to promote better treatment and support for people with rare conditions.
German Clinic for Endocrinology in Frankfurt contacted us in Nov 2005 saying that they "have an increasing number of international patients with hormonal disorders" and also have an English version of their website. The endocrinologist is Prof. Dr. Joachim Happ.
Royal Children's Hospital, Melbourne. Web page for the Department of Endocrinology and Diabetes in which Prof. Garry Warne is based.
Sex Development - Genetics and Biology. Website set up by Australian clinicians and aiming to "help overcome community misconceptions about sexual development by improving awareness and providing up-to-date scientific information".
DSD Working Group (European Society for Paediatric Endocrinology ESPE). A group within the ESPE that aims to bring together basic scientists and clinical physicians involved in this field..
Pacific Centre for Sex and Society. The centre where intersex researcher Prof. Milton Diamond is based.
Child Physiology: Sex Differentiation. An animated learning facility produced by the Hospital for Sick Children, Toronto.
Johns Hopkins Booklet. Syndromes of Abnormal Sex Differentiation - A Guide for Patients and their Families.
Columbia University. Program for the study of sexuality, gender, health and human rights at Columbia University, New York City. Page no longer available? The university has an Instutute for Research on Women and Gender, and the Law School studies legal aspects of gender.
David Hatch MD. Medical site on genital variations and how to diagnose/operate on them.
Online Training Course on Intersex. An online 'e-learning' course developed by Berlin-based Erwin J. Haeberle. Erwin says that this brings the number of his completed courses up to five, half of the planned curriculum of 10.
Alice Dreger. An explanation by Alice Dreger, author of Hermaphrodites and the Medical Invention of Sex (see AIS in Articles/Books page) of what to expect when you are told that your child is intersexed.
Anne Fausto-Sterling. Web site of a developmental geneticist and professor of medical science at Brown University, Providence, USA, who has written influential books on sex and gender (see AIS in Articles/Books page).
Morgan Holmes. Page on university site for the author of Re-membering a Queer Body (see AIS in Articles/Books page). Her personal page at http://www3.sympatico.ca/morgan.holmes/index.html seems no longer available.
Intersex UK. Organisation focusing on achieving equal human rights on behalf of intersex people, such as campaigning on legal aspects (e.g. birth certificates, marriage and adoption).
ISNA. The Intersex Society of North America, a peer support, education, and advocacy group for individuals born with anatomy or physiology which differs from cultural ideals of male and female.
Consortium on the Management of Disorders of Sex Development (DSDs). US-based consortium that proposed a new system of terminology for intersex and produced (2006) two douments a) a Clinical Guidelines for the Management of Disorders of Sex Development in Childhood and b) a Handbook for Parents. The DSD initiative was largely a US enterprise. Patient support/advocacy groups outside the USA were not, on the whole, consulted and therefore had no input on the DSD terminology (the Debates/Discussions page).
ISCA. [Link needed] The Intersex Society of Canada. Box 1076, Haliburton, Ont., K0M 1S0, Canada.
ISOSA. The Intersex Society of South Africa.
Bodies Like Ours. US organisation that provides peer support for people born with atypical genitalia and helps them erase their shame and secrecy.
Réseau des Intersexué-e-s Francophones d'Europe (RIFE). French-speaking internet network of Europe.
Organisation Internationale des Intersexué-e-s (OII). A French (?Canadian) site with pages in a number of languages.
Polish site. A site on 'hermaphroditism' recommended by a contact from Poland.
Ambiguous Genitalia Support Network. A California-based US parents' support network.
Intersex Initiative. A Portland, Oregon based national activist organization working to end the medical abuse of children born with intersex conditions.
ISGI. Intersex Support Group International. A Christian-orientated support organisation.
Peer Support for Intersexuals. A Japanese site.
AGGPG. Arbeitsgruppe Gegen Gewalt in der Paediatrie und Gynaekologie (Workgroup Against Violence in Paediatrics and Gynaecology). An AISSG member wrote "I was just 'surfing and I found an article, "FAQ: Intersexed Kids: Some Do's and Don't's", on this site. I thought it was well written, and got the right tone to discourage surgery and yet not be offensive."
The Middlesex Group. P.O. Box 25, Newtonville, Mass. 02460, USA. Tel: (617) 630-9263. Email: firstname.lastname@example.org. [error msg, May 2000, said "account inactive" - is there a new address?] Not related to The Middlesex Hospital, London.
HELP. Hermaphrodite Education and Listening Post. A US-based group for parents, family and friends of intersexed people.
(Link added 30/04/10)
(See Vaginal Hypoplasia page for details of using dilators to create/extend the vagina by means of pressure dilation.)
Marina Medical. The site of the US company in Florida that markets the vaginal dilators designed by Dr. D. Veronikis. The UK distributor is Cory Brothers Ltd., 6, Bittacy Business Centre, London NW7 1BA. See "Vaginal Hypoplasia" in ALIAS No. 11, "A Move in the Right Direction" in ALIAS No. 12, "8th US Meeting" in ALIAS No. 13 and "Vaginoplasty vs Dilation" in ALIAS No. 14.
Amielle Dilators (Owen Mumford). The site of the company that markets the Amielle vaginal dilators. See "User-Friendly Dilators" in ALIAS No. 11.
Femmax Dilators (MDTi). The site of the company that markets the Femmax vaginal dilators.
Vaginismus.com (dilators). This organisation emailed us (Apr 2008) saying: "Earlier today I was reviewing an article on your website on AIS, and noticed that you kindly provide links to help your readers find vaginal dilators. One of the missions of our organization is to provide women with medical grade, low cost vaginal dilators (style same as Owen Mumford's). We always maintain stock and ship the same or next business day, so we try to do a good job supporting women in this area. Thank you for your well-written and excellent work in the AIS field."
Intelligence Engineering LLC. A women-owned US company that manufactures Stentsitive vaginal dilators/stents used to help resolve vaginal stenosis, vaginismus, vaginal hypoplasia, and vaginal agenesis. Also used after the surgical creation of a neo-vagina, following surgery or radiation therapy for cervical cancer or vaginal cancer.
Zen and the Art of Post-Operative Maintenance. Post-operative care document edited by Intelligence Engineering (above).
Dilators for Widening the Vagina. Light-weight MeDesign dilators that are worn 24 hours a day.
Royal College of Obstetrics and Gynaecology. A UK support group for obstetricians and gynaecologists. Contains a list of gynaecologists who are classed as having up-to-date skills by virtue of having undergone a specified amount of training.
American Congress of Obstetricians and Gynecologists. Non-profit organization of women's health care physicians advocating highest standards of practice, continuing member education and public awareness of women's health care issues.
Womens-Health. A UK site providing "information to women and their partners regarding pregnancy choices, complications and investigations, in addition to some common gynaecological problems. Other areas of the site are for students and doctors working in obstetrics and gynaecology." There's useful information on what's covered in recent medical journals. They added a link to our site.
Women's Health. A London organisation (not the same as Womens-Health, above). Information and support on a wide range of topics. Library, newsletter and mail-order leaflets. Can advise on nearest menopause clinic. Health enquiry line: 020 7251 6580.
The-Clitoris.com. A site that "seeks to create a healthy and open forum for the discussion and dissemination of information about the clitoris, and female sexuality as a whole."
The Vagina Monologues. If your vagina could talk, what would it say? Eve Ensler's thought-provoking and witty stories dealing with the ins and outs of the female genitalia.
Katy No Pocket. A children's book, first published decades before AIS was understood, which many parents find helpful when discussing the impact of AIS with their affected daughters.
Child Growth Foundation. UK organisation that gives advice on many aspects of child growth including endocrine disorders. Can supply a list of UK regional paediatric endocrinology clinics. Babies/children with intersex conditions should be treated at one of these specialist centres rather than at a local hospital.
Contact a Family. UK-based organisation that provides support for families who care for children with disabilities and special needs. Help also provided in setting up a support group. Publishes a directory of disorders and their support groups which is now available on-line. The AIS Support Group (UK) is affiliated to CaF.
In Touch Trust. [Link needed] UK contacts for parents of children with special needs. Tel: 0161 905 2440. Email: email@example.com.
Birth Defects Foundation. A UK-based organisation that has often funded research into the micro aspects of AIS (i.e. the androgen receptor gene) but which doesn't seem able/willing to fund research into whole-body aspects that would actually make a difference to the lives of people living with the condition (i.e. truth disclosure and psychological support - that's where the "defects" are - not in the genes/genitals!)
British Society for Paediatric Endocrinology and Diabetes (BSPED). Their 'Patient Information' section has some pages of notes on CAIS, PAIS and other conditions.
Institute of Child Health. A research institute associated with Gt. Ormond Street Children's Hospital, London.
Johns Hopkins Paediatric Endocrinology. Information on intersex aspects of work at Johns Hopkins Hospital, Baltimore, Maryland, USA.
Centre for Hormone Research. Part of web site of Royal Children's Hospital, Melbourne, Australia. Featuring work of Drs. Garry Warne and Jeffrey Zajac.
Antenatal Results and Choices. UK organisation for people facing decisions as a result of antenatal screening.
For details of an excellent book on HRT written by Caroline Hawkridge with the co-operation of AISSG UK and other support groups, and covering HRT in young women with conditions like AIS, please refer to our Literature page.
Endocrine Online. A UK-based site run by Dr. Gerard Conway, one of our medical advisors at UCLH, London. It provides a useful chart covering all the main types of HRT. It also has a link to an androgen receptor mutation database.
Endocrinology Online. Dedicated to the study of endocrinology.
Society for Endocrinology. UK-based organisation. A group member says "They have useful (and free) electronic copies of interesting articles from a number of endocrinology journals and a place for links to other sites. Their page for other sites includes a section on patient support groups".
The Endocrine Society. A US-based organisation.
Society for Reproductive Endocrinology. US-based; reproductive endocrinologists who are nationally certified.
German Endocrinology Reseachers. A new (2001) wing of the German Endocrine Society made up of young European endocrine scientists. Includes a mailing list, EndoNews.
The Amarant Trust. A UK-based organisation dedicated to providing information on HRT. Helpline: 01293 413000.
UK HRT Preparations. A comprehensive list of HRT preparations available in the UK.
34 Menopause Symptoms. An interesting site providing specific information on symptoms related to menopause. Features research news.
Estrogens. A web site listing all the forms of estrogens on the market.
Ogen. Information about Ogen, a preparation based on oestrone, the hormone to which all oestrogens get converted by the body.
Generic Oestradiol. Information on HRT based on oestradiol valerate, the standard synthetic oestrogen that's used in many HRT preparations.
Adding Androgen to Oestrogen HRT. A site hosted by the same organisation as the 'Osteoporosis Update' (see Osteoporosis Sites, below).
Androgen for Women. An article that explains the effects of androgens in women and how to treat deficiency.
Natural Menopause Advice Service. PO Box 71, Leatherhead, Surrey, KT22 7DP, UK.
Dr. John Lee. Site of a medic who has promoted the use of 'natural' progesterone HRT.
Pro-Gest. The site of a company that markets Pro-Gest 'natural' progesterone cream.
Serenity. The site of a company that markets Serenity 'natural' progesterone cream.
Natural Progesterone vs Provera. 'Natural' progesterone compared with a synthetic version.
Aeron Lifecycles. A clinical laboratory that provides "highly sensitive and specific, non-invasive laboratory saliva tests" for measuring hormones in the body, through US Mail. Aeron also offers a non-invasive assessment of bone turnover, the Pyrilinks-D urine test, as an indication for and monitor of estrogen replacement therapy for osteoporosis. The site also has additional information about HRT, bone health, etc. and promotes a book entitled "The HRT Solution".
HRT and Venous Thromboembolism. A Royal College of Obstetricians and Gynaecologists site.
National Osteoporosis Society. A UK-based organisation.
International Osteoporosis Foundation (IOF). A Swiss-based organization.
Osteoporosis Update. A website dealing with osteoporosis. If you sign up with your e-mail address, you will be sent a monthly update involving new treatments, etc. The site is pretty extensive and very informative.
Bone Physiology. Site designed to educate physicians as well as patients about osteoporosis and bone physiology. This site was brought to our attention by Dr. Susan Ott (works with osteoporosis expert Dr. Robert Marcus at Stanford, USA) who was a guest speaker at the Sept 1999 AISSG US meeting in Seattle.
Genetic Alliance UK. Organisation (used to be called Genetic Interest Group, GIG) that aims to increase the public/government profile of genetic conditions. The AISSG UK is affiliated to Genetic Alliance UK.
UK Genetic Testing Network. Organisation providing a) general information on genetic testing for the public, NHS professionals and laboratories, and b) a searchable database of genetic tests offered by UKGTN member laboratories as part of a national service.
Human Genetics Commission. The UK advisory body on how new developments in human genetics will impact on people and health care. Its remit is to advise on the 'big picture, in particular on social and ethical issues.
National Center for Biotechnology Information. Part of the US-based National Library of Medicine.
The Merck Manual - Patterns of Inheritance. An online medical manual of diagnosis and therapy. This link is to their page on different patterns of inheritance, including the X-linked pattern in AIS.
The Merck Manual - Lyon Hypothesis. An online medical manual of diagnosis and therapy. This link is to their page on X-inactivation or the Lyon Hypothesis. It is an explanation of how carrier mothers can display some signs of Androgen Insensitivity, such as sparse pubic hair, little acne in teenage years and late onset of menstrual periods.
European Directory of DNA Laboratories (EDDNAL). A site that lists some European laboratories offering AIS genetic testing.
N. American Directory of Genetic Test Labs. Similar to above but for N. America.
GeneDx. A diagnostic laboratory in Maryland, USA, that offers genetic testing for AIS (affected individuals and potential carriers).
Alliance of Genetic Support Groups. A national (US) coalition of consumers, professionals and genetic support groups to voice the common concerns of children, adults and families living with, and at risk for, genetic conditions.
Information for Genetics Professionals, including genetic centers, clinics, and departments in US and world-wide.
Genline. A US-based Medical Genetics Knowledge Database.
OMIM. Online Mendelian Inheritance in Man. Excellent site with a lot of genetic information.
Sibling Support. A site that contains books and support material for children who have a brother or sister with a genetic condition.
Unique - The Rare Chromosome Disorder Group. A national support group for families with members who have a rare chromosome disorder. Now has a membership of well over 2,000 families in 46 countries.
Rare Disorders Alliance UK. An organisation run by Contact a Family.
British Association for Sexual and Relationship Therapy. Can recommend therapists.
Relate. UK-based relationship therapy organisation.
RSCPP 'Find a Psychologist' Service. All the therapists accessed via this service are Accredited/Chartered/Registered by a professional body. This distinguishes trainee therapists from those who have completed approved training and appear on official Registers. Professional bodies also provide codes of practice and ethics and complaints procedures.
Counselling Directory. Aims to provide the UK with a counselling support network enabling people to find a counsellor close to them and appropriate for their needs. The organisers say that national organisations publicise their services widely, but local counsellors lack a sufficient clarification of the support they provide, and there is little to distinguish which counsellor would be most appropriate for the person's needs.
HealthyPlace.com. Mental Health Communities. Billed as "a really unique site on the Internet in that we are all about sharing experiences and providing information and support. One of the best ways to help ourselves is to help others". Offers pages on support groups, and communities relating to Gender/GLBTQ and Sex/Sexuality.
Infertility Network UK (INUK). A UK-based organisation.
Surrogacy UK. A UK-based organisation.
COTS Childness Overcome Through Surrogacy. A UK-based organisation.
More to Life. Support for those who remain involuntarily childless.
Resolve (The National Infertility Association). A US-based infertility/adoption organisation.
Human Fertilization and Embryology Authority (HFEA). A UK organisation that licences and regulates IVF centres. Also provides a guide to centres.
Bourn Hall Clinic. The main private infertility clinic in UK, mentioned several times in our newsletter, ALIAS, in connection with new advances in fertility treatments.
Donor Conception Network. Organisation providing information and support to people fathered by sperm donation. Provides page of links to other sites related to advances in infertility treatment.
National Gamete Donation Trust. A UK organisation.
European Infertility Network (EIN). Site on which Dr. Simon Fishel, scientific director of NURTURE (Nottingham Universitys non profit-making research and treatment unit in reproduction) will answer questions. There have been recent advances in genetic techniques that might possibly allow an AIS woman to produce a child bearing her own genes in the not too distant future (see Fertility Issues on our site).
UK Government Adoption Site. Site for the department that deals with all adoptions by people in England and Wales (including registerable foreign adoptions, overseas adoptions etc.)
CHILD (National Infertility Support Network). A UK-based organisation.
Adoption Interlink UK. Was 'Parent-to-Parent Information on Adoption Services (PPIAS)'. A UK-based organisation.
Rainbow Kids. Information about resources, and the rules of different countries concerning adoption.
US Adoption Laws/Statutes. A site that has all of the state laws and statutes you will need when doing an adoption in the US.
Adopting From Vietnam. The web site of a couple who are adopting a PAIS child from Vietnam.
Adopting From India. A site which has information on adopting from India.
FRUA (Families for Russian and Ukrainian Adoption). A site (with 'chat' facility) concerned with adoption from Russia and neighbouring countries.
OASIS (Overseas Adoption Support and Information Service). Information for people wishing to adopt from third world orphanages.
AFAA (Association of Families who have Adopted from Abroad). Information for people adopting from abroad.
CACH (Children Adopted From China). Support group for people in the UK adopting from China.
Adoption UK. Advice for prospective and existing adoptive families.
ivillage.co.uk Message Boards. The women's site "ivillage" has two message boards that might be of interest ('Coping with Permanent Childlessness' and 'Infertilty and Family Plans'). The latter was started by the AIS sister of a past AISSG UK member and is for women who have not given up on the idea of having a family.
Article in The Times (7 June 2000) about medical web sites.
Article in The Guardian (7 June 2000) about medical web sites.
Health On the Net. A Geneva-based not-for-profit foundation that provides a portal to medical information on the Internet. It is an international initiative which, four years ago, recognized the need for a basic ethical standard; and 3,000 sites now subscribe to its code in 36 different countries.
International Alliance of Patients' Organisations (IAPO). UK organisation that publishes The Patients' Network journal/magazine.
The Patients Association. A UK organisation that looks after patients' interests. Can advise on, amongst other things, how to gain access to your medical records. Helpline 0845 608 4455.
The Patients Forum. A UK network of national and regional organisations concerned with the healthcare interests of patients and their families and carers.
NHSDirect. The UK National Health Service (NHS) site.
UK Consultants' Special Interests, Clinics and Contact Information. "This website has alphabetical lists of consultants, NHS trusts and hospitals. Not sure how up to date it is but may be useful when trying to track down those pesky clinicians!!"
Dr Foster. An independent UK organisation that produces comprehensive and authoritative measures of health service performance. It is intended to help patients and their family doctors make informed decisions about where to obtain the best healthcare.
MedicineNet. Health and medical information.
What Doctors Don't Tell You. A UK organisation that publishes a newsletter on medical issues.
DIPex - Database of Individual Patient Experiences. Based at Dept. of Primary Health Care, University of Oxford. Multimedia resource to support patients and educate healthcare professionals. Provides access to experiences of other patients who have faced similar dilemmas. Aims to provide more balanced encounters between patients and healthcare professionals by providing detailed access to the patient perspective.
The Tall Persons Club. People with conditions like AIS are often tall. This is the site of a UK club. They published a summary of AIS, with our contact details, in their September 1998 newsletter and they have a link to us on their web site.
The Marfan Association. Marfan's Syndrome is a connective tissue disorder that can produce heart problems and long limbs, fingers and toes. Growth is unrestrained due to lack of elastic pull on the joints.
(Links reviewed 15/04/07)
If you don't find the journal you're looking for via one site below, try another. They each offer a different selection of journal articles.
National Library of Medicine (NLM) US-based library.
NLM Health Information. Page on above site offering links to health information resources.
MEDLINE/PubMed. Direct link to facility on NLM site for searching medical publications database. Provides access to over 12 million MEDLINE citations back to the mid-1960's and additional life science journals.
PubMed Central. Direct link to National Center for Biotechnology's digital archive of life sciences journal literature. NCBI (part of NLM) is "taking the lead in preserving and maintaining open access to the electronic literature, just as NLM has done for decades with the printed biomedical literature."
JournalReview.org. An internet resource that allows you to search, using keywords, for articles across a range of medical journals (in fact, all those journal articles that are indexed in PubMed, see above). By navigating to the journal and article of interest, anyone can initiate, read, or add to a discussion as they see fit, to facilitate open peer review and discussion of medical literature. It empowers each individual to engage scholars around the world.
National Library for Health. A UK (NHS) online facility aiming to deliver a modern, equitable library service to all NHS staff, and to extend NHS library services to patients and the public for the first time.
Endocrine Journals Search Facility. A search facility provided by the J. Clinical. Endocrinology and Metabolism giving links to online journal articles. You can either search the various journals in the JCEM 'family' or search all endocrine journals in the database.
ScienceDirect. Provides online access to more than 1,600 journals, representing more than 2.5 million full-text articles. Site built up by Elsevier (science/medical publisher) but gives access to many other journals, not just their own.
C-net Medical Section. Wide and varied, has updates of medical stuff in journals. [Need new link]
Merck Index. General pharmaceutical/medical information. The Merck index is internationally recognised for its descriptions of chemicals and pharmaceuticals and their safety/side effects.
Medical Dictionary. Look up unfamiliar medical terms in this on-line medical dictionary.
eMedicine. Free access to online textbooks.
Find Articles. A web-based search facility for locating magazine articles.
Internet Archive. Old versions of web pages, that in some cases may no longer be displayed on their parent site, can be located via this facility.
Intersexism in Sport. A group member said "I came across this web site on intersexism in sports. I found it rather interesting. It gives a history on intersexism in sports, as well as a nice list of links relating to intersexism."
Intersex in 2000 Olympics. Article about an incident concerning two women with an intersex condition at the Sydney 2000 Olympics.
(Link amended 30/04/10)
Gender Dysphoria Trust International. [Link needed] PO Box 7624, London WC1N 3XX.
Press for Change. Campaigning UK organisation working for equality for transsexuals under the law.
The Gender Trust. Registered UK charity, with membership, that gives information and advice on gender reassignment issues.
Gendys Network. Emphasis on person-centred care and therapy.
Mermaids. Support group for children and teenagers with gender identity issues and their families.
The Gender Identity Research and Education Society (GIRES). Registered UK charity that sponsors research and education on gender identity.
AEGIS. A gender issues education site.
Netherlands Institute for Brain Research. Studies on sex differences in the human brain linked to transsexuality.
L.J.G. Gooren. Department of Endocrinology, Free University Hospital, 1007 MB Amsterdam, The Netherlands. Press for Change (see earlier) says: "He does research into the physical causes of transsexuality and intersex. Is world renowned. Some of his students have researched various intersex conditions over the years. Free University has some extremely good research people in all areas." Need an up to date link.
Transwoman and Annie Richards. May be one and the same. A transsexuality site that seems to use information on AIS (including references to material on our site) to bolster the gender dysphoria cause. Why is this thought necessary? A number of years ago we found that large chunks of text had been lifted from our site and reproduced without permission. At our request, our group/website is now mentioned and direct links to pages on our site are employed rather than reproducing our text.
Merkin Discussion. The notion of pubic hair wigs (merkins) is a topic of some interest and amusement among group members (see "More Merkin Moments" in ALIAS No. 14, "Fancy Fuzz" in ALIAS No. 16 and "March Merkins" in ALIAS No. 17). This site has a discussion between Cecil Adams and someone called Andrew on the subject, reprinted from the Chicago Reader.
How to Understand Medical Writing on Intersex. Satirical definitions of various terms associated with intersex.