Remember The Girls Launches ‘Rare Rewritten’ Advocacy Campaign Urging Medical Websites to Reflect Reality of Females with X-Linked Conditions
Extensive medical research demonstrates that women frequently develop physical symptoms associated with X-linked disorders.
Written by Taylor Kane
Posted 07-22-2025
Women and girls with X-linked genetic conditions—including Duchenne muscular dystrophy, Fabry disease, and hemophilia—are often referred to on medical websites as unaffected “carriers.”
Medical research has conclusively shown, however, females with X-linked conditions can and often do develop symptoms of their diseases. A 2021 study by Choi et. al found that 80% of surveyed X-linked heterozygous females reported symptoms they believed were related to the X-linked condition. Unfortunately, many websites such as OMIM® and the NIH’s MedlinePlus, have yet to accurately incorporate this research, leaving the symptoms of females under-acknowledged, under-researched, and under-treated.
The goal of Rare Rewritten is to ask prominent organizations with medical websites to bring their resources on X-linked conditions up to date. Remember The Girls has written a letter with the help of its Medical Advisory Board outlining why and how these medical websites should be edited accordingly.
“Specialists who care for patients with X-linked conditions have increasingly recognized that women and girls in these families can have symptoms, even severe or life threatening ones,” says Dr. Rebecca Spencer, member of the Remember The Girls Medical Advisory Board.
“It’s long past time for medical resources to provide accurate information on X-linked inheritance and X-linked conditions in females. We are not ‘just carriers,’” says Taylor Kane, founder and executive director of Remember The Girls and a woman impacted by adrenoleukodystrophy (ALD).
To learn more about Rare Rewritten, visit rarerewritten.org.
Rare Rewritten is sponsored by Kyowa Kirin, Amgen, and Sanofi.
About Remember The Girls:
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.
Contact:
For more information about the organization, visit rememberthegirls.org or email info@rememberthegirls.org.