Support Groups

  • InterConnect – Major support group covering a wide array of intersex variations and DSD and serving individuals and families. Based in the US but with membership throughout the world. Formerly known as AIS-DSD Support Group
  • Beautiful You MRKH Foundation – Support group for those with Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome
  • CARES Foundation – Focuses on medical information and support around Congenital Adrenal Hyperplasia (CAH).
  • Hypospadias and Epispadias Association – Offers support and education for people born with hypospadias and epispadias and their families.

Education & Understanding Intersex or DSD

  • Accord Alliance – Has various resources for learning about DSD/intersex as well as a “Handbook for Parents” . Also a Resource Guide.
  • DSDTeens – Website made by and for young people with intersex variations or DSD to provide information on puberty, growing up and living with these variations.
  • DSD Families – Has a variety of resources for caring for infants, children and adolescents with DSD/intersex variations.
  • Resource Guide | Accord Alliance

Personal experiences & stories

Organizations that advocate for intersex people

  • interACT Advocates for Intersex Youth – Works to raise intersex visibility and promote policy and law that protects intersex youth
  • Intersex Society of North America (ISNA) – Prolific organization in intersex advocacy and activism that has closed its doors but maintains its website as a historical archive of past work. interACT now does much of the work ISNA once performed.
  • Accord Alliance – Advocates for improved healthcare and better collaboration for all stakeholders involved in DSD/intersex
  • Intersex Justice Project – Organization focused primarily on ending intersex genital surgeries

Books – Non-Fiction

  • Nobody Needs to Know: A Memoir by Pidgeon Pagonis – NEW release in 2023 by an intersex activist well-known for their work in advocacy for youth and marginalized people
  • Fixing Sex by Katrina Karkazis – Perspectives of intersex individuals, their families and clinicians that can inform the treatment of people born with atypical sex characteristics. Written by an anthropologist and bioethicist.
  • Contesting Intersex: The Dubious Diagnosis by Georgiann Davis, PhD – Written by a sociologist who herself is intersex, about the significant political and culture implications of diagnoses of intersex/DSD
  • Born Both: An Intersex Life by Hida Viloria – Autobiographical account of an intersex person turned activist. Covers gender identity, self-acceptance and love
  • XOXY: A Memoir by Kimberly M. Zieselman – Recent memoir of a woman with Complete Androgen Insensitivity Syndrome who is also a professional, a mother and intersex activist
  • Between XX and XY: Intersexuality and the Myth of Two Sexes by Gerald A. Callahan, PhD – Fascinating account of male, female, and everything both or in between. Written by a microbiologist but in an accessible and entertaining style.
  • What Makes a Baby by Cory Silverberg – I have not reviewed this one myself but believe this to be an illustrated book for young children to answer the question “Where do babies come from?” Intentional about using non-gendered, more “inclusive” language.

Books – Fiction

  • None of the Above by I.W. Gregorio – Novel about an adolescent with an intersex variation. Written by a urologist and author.
  • Cattywampus by Ash Van Otterloo – Book for pre-adolescents (age 8 – 12) on magic and friendship, with a protagonist who has an intersex variation (androgen insensitivity syndrome).

Personal websites of intersex people

Other interesting resources

  • Gender Inclusive Biology – compiles materials and guides for educators that can aid in making teaching biology, sex and gender more inclusive of variations in biological sex as well as gender identity

Educational videos on intersex or sex development

Clinical resources & guidelines