Being diagnosed with a differences of sex (DSD) condition — or having no diagnosis — can be overwhelming for both a patient and family members.
As part of our Differences of Sex Development program, we provide resources below for support, counseling and advocacy groups.
DSD Counseling Resources
Our DSD team provides in-person counseling:
DSD Advocacy and Support Groups
- Accord Alliance promotes comprehensive and integrated approaches to care that enhance the health and well-being of people and families with differences in sex development (DSD). The website provides DSD FAQs, resources, links to research publications and more.
- Androgen Insensitivity Syndrome (AIS) Support Group provides information about Androgen Insensitivity Syndrome (AIS) and other differences in sex development to support and inform affected individuals and their families. The website provides educational resources, personal stories, and a monthly video hangout.
- Intersex Society of North America (ISNA) was an organization created to “end shame, secrecy, and unwanted genital surgeries for people born with an anatomy that someone decided is not standard for male or female.” The organization closed in 2008; however, the website remains operational and provides a wealth of information for families dealing with intersex conditions.
Congenital Adrenal Hyperplasia (CAH) Support Groups
- CARES Foundation leads in the effort to improve the lives of the Congenital Adrenal Hyperplasia (CAH) community and seeks to advance quality health care through support, advocacy, education and research.
- The CAH (Congenital Adrenal Hyperplasia) Support Group is a sub group of CLIMB (Children Living with Inherited Metabolic Diseases). Note: Most of the in-person support group meetups are in the United Kingdom; however, the website hosts an online support group and provides FAQs.
- Differences of Sex Development research through our own team at Washington University Physicians offers clinical research opportunities for our patients.
- Disorders of Sex Development Translational Research Network (DSD-TRN), based at UCLA, is a national multi-institutional research network that aims to improve knowledge and care for patients with DSD.
Hypospadias and Epispadias
- The Hypospadias and Epispadias Association, Inc., offers support so that people with hypospadias or epispadias never need to feel alone. The website provides personal stories, information on upcoming events, FAQs, educational articles and more.
MRKH Support Groups
- Beautiful You MRKH Foundation’s mission is to create a supportive community that partners with health care professionals to increase awareness and empower women of all ages with Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH) to feel beautiful, just as they are.
- MRKH Organization is for women with Mayer-Rokitansky-Küster-Hauser Syndrome, also known as Mullerian agenesis, vaginal agenesis and congenital absence of vagina.