You Are Not Alone

To provide information and support for those affected by Intersex/ Differences of Sex Development, we offer resources, guides, information, and websites, and provide access to individual and group connection.

Resources

• FAQs
• A Personal Letter 
• Find us on Facebook
• Diversity Statement
• Medical Disclaimer
• Orchid Connect Forum

Receive support, share, and learn through our private forum, Orchid Connect. A variety of groups are available to best meet your needs. One of our wonderful welcome committee members is ready to help you sign up! This is an excellent way to have an interactive experience sharing with access to our chat room, blog, articles, and photo albums. If you’re interested in connecting with others, please contact us for more information.

Helpful Links

The following are a few links to other beneficial websites:

Accord Alliance A group dedicated to DSD/intersex, with a goal to promote a comprehensive and integrated approach to care that enhances the health and well-being of affected people and families. They foster collaboration, education and advocacy.

Inter/Act Advocates for Intersex Youth uses innovative legal and other strategies, to advocate for the human rights of children born with intersex traits. Known for their amazing youth leadership and advocacy program, Inter/Act can also answer parents’ questions about their children’s health care and privacy rights. In addition, they can give advice about school accommodation, athletics questions, and other legal issues. They can help parents advocate effectively in the doctor’s office by providing the right information and questions to ask.

AIS Support Group (UK) The AISSG-USA (now called AIS-DSD Support Group) was founded in 1995. However, considerable pioneering work in creating a network of support was done by a group of dedicated women in the United Kingdom. Their web site remains the largest repository of information on Androgen Insensitivity.

Beautiful You MRKH Foundation Beautiful You MRKH Foundation promotes self-esteem, and empowers girls and women with MRKH to embrace their beauty, just as they are.

Bodies Like Ours Bodies Like Ours seeks to end the shame and secrecy that surrounds people born intersexed and/or with atypical genitals through community and peer support.

CARES Foundation CARES Foundation works to improve the lives of the Congenital Adrenal Hyperplasia community and seeks to advance quality health care through support, advocacy, education and research.

DSD Research Website is an initiative of the research program in disorders of sex development, funded by NHMRC Australia. They are committed to strengthening the links between basic researchers, medical practitioners, and affected people and their families. It is their hope that improved communication and interaction will lead to a better understanding and acceptance of variations in sex development among affected families and the broader community.

DSD Guidelines Accord Alliance has published two documents to support care of people and families with DSD: “Clinical Guidelines for the Management of Disorders of Sex Development in Childhood” for medical practitioners and “Handbook for Parents” for parents/families. These documents are available online here in PDF form free-of-charge or in print form on a donation basis from Accord Alliance’s website.

Genetic Alliance Genetic Alliance uses the expertise of the genetics community to provide advocacy to groups, schools, and businesses that collaborate to improve human health for individuals and families living with genetic conditions.

Hypospadias & Epispadias Association, (HEA) HEA was founded for the education and support of people born with hypospadias or epispadias, their families, and loved ones.

Interface Project Interface project’s mission is to gather and share stories of people living with intersex traits, or differences of sex development, and to spread the message “No Body Is Shameful.”™

Intersex Society of North America, (ISNA) ISNA (1993-2007) was an organization devoted to systemic change 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 web site remains as a useful reference.

National Organization for Rare Disorders, (NORD) NORD’s mission is to help people with rare “orphan” diseases and assist the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research and service.