White variation of logo with two Xs. One is outlined with a transparent background and the other is white with swirls on the right side.
X-linked conditions impact us more than you think
X-linked conditions impact
us more than you think

We are not just carriers.

We are mothers. caregivers. patients. advocates. friends. mentors. daughters. sisters.

Since our founding in 2017, our community has grown to include:

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40 X-Linked Conditions

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1,300 Community Members

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30 Countries Worldwide

We are committed to advocating for females impacted by X-linked conditions.

Remember The Girls aims to break the stigma facing females impacted by X-linked conditions by providing them with tools to seek support, engage with research, and access family planning options, as well as by advocating for increased attention of medical professionals to the physical, emotional, and reproductive needs of this community.

Our priority is our community.

Read more about how Remember The Girls came to be and how we help fight against the stigma of being “just carriers.”

Remember the Girls: Driving Awareness of Female Carriers of X-Linked Rare Diseases

Female carriers of X-linked recessive conditions are usually unaffected or only mildly affected, and their symptoms are often dismissed or ignored.

Doctors Said These Women’s Mutated Genes Wouldn’t Harm Them

But they were always at risk of developing diseases with potentially severe effects.

Remember The Girls empowers women affected by X-linked conditions

Remember The Girls provides education on X-linked conditions, family planning resources, personal stories, access to research studies, and an online group where women can share their experiences.

Remember The Girls: Bringing X-Linked Carrier’s Concerns to the Forefront

Witnessing the silencing of carrier’s voices based on the assumption that X-linked females are “just carriers” mobilized Tayor Kane, at the age of nineteen, to create a nonprofit organization.

Interview with Taylor Kane, founder of Remember The Girls

In this interview, Marie Discenza, MS, CGC, speaks with Taylor Kane, founder of Remember The Girls, an organization that helps provide community and support for carriers of X-Linked disorders.

Master List

Check out our X-linked condition master list.

To date, there have been hundreds of X-linked conditions identified – many of them are ultra-rare, only affecting a few people around the world. While all X-linked conditions are caused by mutations on the X chromosome, each condition is different and has a unique set of symptoms.

Family Planning

There are options for growing your family.

As an X-linked carrier or affected female, there are many options to start or continue your family. We’ve made a concerted effort to feature all routes you may take in your family planning journey, from deciding not to have children, to natural conception, to adoption, to IVF with PGT, and more.

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Connect with others like you in our Facebook support group.

Remember The Girls runs a private Facebook group with over 1,300 members impacted by more than 40 X-linked conditions and from more than 30 countries in the world. Join our online community of females impacted by X-linked conditions to seek and provide support, ask questions, find resources, and learn how to advocate.