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 organization strives for a world where females impacted by X-linked conditions have access to the support, resources, and care they need to manage their physical and mental health and build their families.
Advocacy
Advocating for the health and reproductive needs of our community.
Education
Educating the medical profession about the issues faced by our community.
Research
Advancing research to better understand potential symptoms and improve treatment options for our community.
Got questions about the organization? We’ve got answers.
How did Remember The Girls begin?
Remember The Girls was founded in 2017 by Taylor Kane, a carrier of the X-linked condition adrenoleukodystrophy. Growing up, Taylor knew she was a carrier for as long as she can remember, but was consistently assured that she was “just a carrier” and would never be impacted by ALD. In high school, she learned there were many ALD “carriers” who were experiencing symptoms but weren’t being taken seriously. After getting more involved in ALD carrier advocacy, she discovered there were many other X-linked diseases where women and girls were being sidelined. Taylor felt it essential to raise awareness of the fact that X-linked carriers not only face difficulties when it comes to accessing family planning options and genetic testing, but also may be at risk of symptoms but are often barred from research and marginalized by medical professionals. Determined, Taylor decided to start a nonprofit organization to bring together females impacted by X-linked conditions and advocate their needs. This is how our organization was born!
Why is the organization named Remember The Girls?
X-linked conditions were long considered to be diseases that only impacted boys and men. The organization is named Remember The Girls to draw attention to the fact that women and girls can also be impacted by X-linked conditions, and shouldn’t be left out of the conversation. Remember The Girls supports all people with two X chromosomes who are impacted by X-linked conditions.
What does Remember The Girls do?
First and foremost, Remember The Girls is the sole organization which brings together females impacted by different X-linked conditions. In addition to creating community, we build educational resources, lead advocacy initiatives to increase access to family planning options, genetic testing, and research opportunities, and collaborate with key stakeholders to advance quality of life for females impacted by X-linked conditions.
How can I get involved or support the organization?
If you are a female impacted by an X-linked condition, please consider joining our private Facebook support group.
Other ways you can get involved are by volunteering your services or making a donation. If you are interested in volunteering, please send us an email.
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.
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.