Resources

Being diagnosed with a DSD condition or having no diagnosis can be overwhelming for both the patient and family members. For support and counseling, resources are listed below.

Counseling resources

Our DSD team also provides in-person counseling:

Psychology: 314-454-6069

Psychiatry: 314-286-1700

Advocacy and support groups

Accord Alliance

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).
http://www.accordalliance.org/

AIS Support Group

The AIS-DSD support group provides information about Androgen Insensitivity Syndrome (AIS) and other differences in sex development (DSD) to support and inform affected individuals and their families.
http://www.aisdsd.org/

CAH Support Groups

The CAH (Congenital Adrenal Hyperplasia) Support Group was formed approximately 16 years ago. It is a sub group of CLIMB (Children Living with Inherited Metabolic Diseases).
http://www.livingwithcah.com/

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.
http://www.caresfoundation.org/

DSD Research

The 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.
http://dsdtrn.genetics.ucla.edu/

Hypospadias and Epispadias

The Hypospadias and Epispadias Association, Inc., offers support so that people with HS/ES never need to feel alone.
http://heainfo.org/

MRKH Support Groups

The mission of the Beautiful You MRKH Foundation is to create a supportive community that partners with health care professionals to increase awareness and empower women of all ages with Mayer-Rokitansky-Kuster-Hauser Syndrome (MRKH) to feel beautiful, just as they are.
http://www.beautifulyoumrkh.org/

The MRKH organization is for women with Mayer Rokitansky Kuster Hauser Syndrome, also know as Mullerian agenesis, vaginal agenesis and congenital absence of vagina.
http://www.mrkh.org/