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

Many resources, such as medical websites and textbooks, have been slow to catch up, leaving the symptoms of women and girls with X-linked conditions under-acknowledged, under-researched, and under-treated. Remember The Girls is working to change that with our Rare Rewritten campaign.

Remember The Girls is a non-profit organizing aiming 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.

These are examples of online medical resources that do not accurately reflect what we know about X-linked conditions and how they impact females. This list is not comprehensive.

We drafted a letter to rewrite these wrongs.

Remember The Girls developed a letter calling on organizations to correct inaccurate representations of X-linked inheritance and the impact of X-linked conditions on women and girls.

In the letter, we ask recipients to rewrite the wrongs in alignment with our three key ‘asks,’ supported by detailed, evidence-based explanations for each point.

Developed with guidance from our Medical Advisory Board, the letter is also backed by seven rare disease patient advocacy groups.

As part of our Rare Rewritten campaign, we created two versions of the letter to support each wave of outreach: Wave 1 targets organizations that publish medical websites, while Wave 2 is directed toward medical textbook editors.

These are the recipients of our letter.

Here are the five medical websites we have chosen to send our letters to. We chose these websites because of their credibility among patients and providers.