Family, Patient, Peer Support
Accord Alliance does not provide direct support services. However, many families and patients will find useful information in the links below. In particular, the Handbook for Parents shown there includes a page listing a number of support groups.
Handbook for Parents
The Handbook for Parents is an excellent source of information for parents, or for anyone looking for basic information about disorders of sex development. The Handbook for Parents can be viewed in its entirety, free online, you can download a pdf, or you can receive a complimentary copy by making a donation to Accord Alliance.
Clinical Guidelines
The Clinical Guidelines for Management of Disorders of Sex Development in Childhood provides information for providers, and contains an excellent list of references, many with live links to read online. The Clinical Guidelines can be viewed in its entirety, free online, you can download a pdf, or you can receive a complimentary copy by making a donation to Accord Alliance.
Consensus Statement on Management of Intersex Disorders
This important document, the outcome of collaborative work by fifty international experts (including two members of Accord Alliance's Advisory Committee) represents an important advance in thinking about appropriate care for patients and families affected by disorders of sex development. This is also the document that established "disorders of sex development" as a replacement for archaic nomenclature. Read "Consensus Statement of Management of Intersex Disorders" free online. (Pediatrics 2006;118;e488-e500. DOI: 10.1542/peds.2006-0738.)
Animation of Prenatal Genital Development
The Hospital for Sick Children in Toronto has prepared a very helpful interactive graphic that can help explain the development of external genitalia and internal reproductive organs before birth, and some of the variations that can occur. The site has also been gradually adding more detailed explanations of several specific conditions. As of April 2008, AIS (androgen insensitivity syndrome), CAH (congenital adrenal hyperplasia), hypospadias, XY mosaiciscm, gonadal dysgenesis, and 5-alpha reductase deficiency were covered.
Visit the interactive graphic on genital development.