Last Updated 16 Feb 2025
From support groups to educational resources and personal stories here is a compilation of the most helpful resources we’ve found on intersex, differences in sex development or variations in sex characteristics.
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 / 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 stories & experiences
- Every Body (2023) – Documentary film by Focus Features that examines the lives of three people who are intersex and also depicts some of the history and social setting of intersex and related medicine in the United States.
- The Interface Project – Wonderful resource for seeing the real faces and stories of people born with intersex variations.
- Ted & TedX Presentations (video):
- Oprah episode on “Growing Up Intersex” (2007)
- Teen Vogue feature with various profiles of young intersex people
Advocacy organizations
- 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 & clincal guidelines
- Advancing Health Equity for Intersex Individuals (January 2025), U.S. Department of Health and Human Services, Office of the Assistant Secretary for Health – links to interactadvocates.org as report was removed from the HHS website
- The Biological Reality of Sex and Intersex: A Response to the Executive Order, “Defending Women from Gender Ideology Extremism and Restoring Biological Truth to the Federal Government” – Pediatric Endocrine Society
- A Call to Update Standards of Care for Children with Differences in Sex Development (2021)
- Caring for Individuals with a Difference of Sex Development (DSD): A Consensus Statement (2018)
- Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care (2016)
- Consensus Statement on Management of Intersex Disorders (2006)
- DSD Guidelines: Clinical Guidelines in the Management of Sex Disorders in Childhood
- DSD-Life
- Accord Alliance:
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
TED Talk “The Way We Think about Biological Sex is Wrong” – Emily QuinnSciShow “There Are More Than Two Human Sexes” – Hosted by Hank Green – quick summary of how human sex is determined with mentions of intersexSciShow – “Intersex Across the Animal Kingdom” – hosted by Hank Green – summary of several intersex traits in humans and animals
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
Resources for people of faith
- Stories of Intersex and Faith Documentary – film website
- Megan DeFranza, “Male, Female, and Intersex in the Image of God” (Diving Deeper, September 2023) – video
- The Bible For Normal People – Episode 19: Megan DeFranza – The Bible and Intersex Believers – video
- Lianne Simon und Dr. Megan DeFranza: Intersex Christen geschaffen im Bilde Gottes – Intersexualität – video