Helpful resources on intersex variations or DSD

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.

Understanding Intersex & DSD / Education
  • 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.

Personal stories & experiences
Activism and advocacy
  • 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


Health resources & clinical guidelines

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

Educational videos on intersex or sexual development

Resources for people of faith