Intersex/DSD Resources

National Intersex/DSD Resources

Accord Alliance
Accord Alliance's mission is to promote comprehensive and integrated approaches to care that enhance the health and well-being of people and families affected by DSD by fostering collaboration among all stakeholders. Programs include working with health care facilities to create guidelines for people affected by DSD, co-hosting a research symposium for research about DSD, developing a teacher's guide with information, and working to improve the website (which serves as an online resource for people and families affected by DSD).

AIS/DSD Support Group for Women and Families
AIS/DSD Support Group for Women and Families is dedicated to helping women and children with AIS (Androgen Insensitivity Syndrome) and other DSDs (Disorders of Sexual Development). The site is a network of hundreds of people whose lives have been touched by these diagnoses. The site has information about and opportunities to become involved in support, education, and advocacy.

The American Association for Klinefelter Syndrome
Information and Support
Toll-Free Support Hotline: 1-888-466-KSIS(5747)
The American Association for Klinefelter Syndrome
Information and Support (AAKSIS) is a national volunteer organization with the mission of education, support, research, and understanding of 47 XXY and its variants, collectively known as Klinefelter Syndrome. Along with its support hotline, AAKSIS provides a great deal of information on its website, as well as links to regional support groups.

Bodies Like Ours
Bodies Like Ours is an online resource for intersex individuals. The site provides information and peer support, including an online forum and individuals' stories.

CARES Foundation: Congenital Adrenal Hyperplasia Research, Education and Support
(866) 227-3737
CARES Foundation leads the effort to improve the lives of the Congential Adrenal Hyperplasia community, and seeks to advance quality health care through support, advocacy, education, and research. CARES programs benefit more than 3,200 families and medical professionals across the United States and abroad. These programs include one-on-one support, educational programming, physician referral service, advocacy, local support groups, and financial assistance for families.

Intersex Initiative
(971) 244-8698
Intersex Initiative (IPDX) is a Portland, Oregon based national activist and advocacy organization for people born with intersex conditions. The organization's website provides a great deal of information about intersex conditions, as well as information about the organization's projects (including a speaker's bureau, a media center cataloging representations of intersex in the media, intersex law and academic studies, among a number of other projects).

Intersex Society of North America (ISNA)
ISNA is no longer an active organization, however its website hosts a wealth of information about intersex conditions, both for people who have them and for parents/family/friends.

The MAGIC Foundation
Toll-Free Parent Helpline: 800-3MAGIC3 (800-362-4423)
Office: (708) 383-0808
The MAGIC Foundation provides information about a wide variety of conditions that affect children's growth, including some intersex conditions.

Organisation Intersex International (OII) USA
The Organisation Intersex International (OII) is a global advocacy group for people born with bodies which have atypical sexual characteristics. It is the largest intersex support group in the world, with branches on six continents. Provides education, support, and advocacy information.

Turner Syndrome Society of the United States
The Turner Syndrome Society of the United States is a national non-profit organization that provides health-related resources to patients, families, and physicians for the diagnosis and treatment of Turner Syndrome. The website includes a great deal of information about Turner Syndrome, including links to support groups, a professional directory, and a number of other educational resources.

New York State Intersex/DSD Resources

CARES Foundation Support Groups
New York Metropolitan Area
Deborah Brown: gro.noitadnuofserac|troppus.3yn#gro.noitadnuofserac|troppus.3yn

New York (Upstate)
Dona Cameron: gro.noitadnuofserac|troppus.2yn#gro.noitadnuofserac|troppus.2yn

AAKSIS Regional Support Groups: New York Area
Contact: Grace at moc.loa|438589resU#moc.loa|438589resU

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