Women and girls with X-linked genetic conditions (such as Fragile X syndrome and hemophilia) are often referred to on medical websites as simply unaffected "carriers."

As medical research has conclusively shown, however, females with X-linked conditions can and often do develop symptoms of the disease. Despite having an extra “unaffected” X chromosome, the severity of these symptoms can be clinically significant and can be as severe as those experienced by males with the same disorders.

Unfortunately, many medical resources have been slow to accurately incorporate this research, leaving the symptoms of women and girls under-acknowledged, under-researched, and under-treated.

To address this, Remember The Girls has launched Rare Rewritten, a campaign to encourage prominent organizations with medical resources to accurately reflect the realities of X-linked conditions. We are requesting that medical resources:

• Describe the inheritance pattern as “X-linked” rather than using the terms “dominant” or “recessive" (the latter distinction many experts suggest is biologically inaccurate);
• Avoid the term “carrier” in descriptions of X-linked inheritance—many females with X-linked conditions are symptomatic and not simply carriers;
• Explain that the likelihood of symptoms in females varies from condition-to-condition and person-to-person due to various factors, one being random versus skewed X-inactivation.

We wrote a letter which provides data and research to support each of these requests and suggest alternative language that organizations can use to edit their resources accordingly. 

Please consider signing this petition to show your support for Rare Rewritten. For more details about the campaign, visit rarerewritten.org.

Remember The Girls is a 501(c)(3) organization founded in 2017 to support and advocate for women and girls (“carriers”) of rare X-linked conditions. Since its founding more than five years ago, Remember The Girls has expanded into 30+ different countries across the globe. During this time, the organization has supported over 1,400 carriers impacted by 60+ X-linked conditions.