Correcting misinformation about women and X-linked disorders

Rare Rewritten, a new campaign by the nonprofit group Remember the Girls, seeks to persuade prominent medical organizations to update their online information about women and girls with X-linked disorders.

According to the group’s founder, Taylor Kane, whom I interviewed back in April, the campaign was created to combat misinformation online that claims women and girls with X-linked conditions are merely carriers.

I recently had the opportunity to chat with Kane again, via email, about this vital campaign.

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Kane said the campaign involves three main asks that were developed with the help of the group’s medical advisory board. The first is for medical organizations to “describe the inheritance pattern as ‘X-linked’ rather than using the terms ‘dominant’ and ‘recessive.'” That’s because dominant and recessive terminology implies that a female would need two affected X chromosomes to manifest disease symptoms, which isn’t the case.

The second ask is to avoid the term “carrier” in descriptions of X-linked inheritance. That’s because many females with X-linked conditions are not only carriers, but also symptomatic.

The final ask is to explain that the likelihood of symptoms in females varies from condition to condition and person to person. Various factors cause this variation, such as X-inactivation (also known as lyonization), in which one of the copies of the X chromosome in females is inactivated during embryonic development.

“Extensive medical research has shown unequivocally that women and girls frequently do develop physical symptoms associated with X-linked conditions,” Kane said.

Sadly, many medical resources have been slow to acknowledge this research. The result is that misinformation can reinforce the inaccurate and ubiquitous belief that women and girls are not affected by X-linked disorders.

“This leaves the symptoms of women and girls underacknowledged, underresearched, and undertreated,” she said.

Kane emphasized the critical need for organizations with medical websites to ensure that their information about X-linked conditions is current. Updated information helps clinicians and females with X-linked disorders understand the true risks.

Changing the narrative

The Rare Rewritten campaign is starting by reaching out to five organizations to ask them to update their resources. Kane said one organization has already responded positively and indicated that they’ll make the changes to their online information about X-linked conditions.

Rare Rewritten is also promoting a Change.org campaign with the hope of obtaining at least 500 signatures in support.

As a woman with hemophilia, I wanted to know how Kane sees this campaign affecting our community. She emphasized that Rare Rewritten is important to women with hemophilia, because for decades we’ve known that women and girls who have a variant that causes hemophilia often have symptoms of disease. Some women even manifest severe symptoms.

“Women in the hemophilia community have done so much advocacy work to change the narrative surrounding what it means to be a female with hemophilia,” she said. “It is our hope that Rare Rewritten can help them and all females with X-linked conditions to achieve gender parity in their disease communities.”

If you’d like to get involved, Kane offered the following suggestions:

1. Sign the Change.org petition and share it with family and friends
2. Send your medical providers a link to the Rare Rewritten section of the Remember the Girls website
3. Post about the campaign on social media using the Remember the Girls’ media tool kit

I’m so thankful that Kane took the time to share this important campaign with me. I spent years struggling with bleeding symptoms that went unaddressed by medical providers. My quality of life improved dramatically when I was finally diagnosed with hemophilia, which enabled me to access proper treatment. We need the barriers to diagnosis and treatment eliminated for all carriers of X-linked diseases. This campaign to correct misinformation is an essential step toward that goal.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.