The myth of X-linked conditions not impacting women and girls ends here.
Misinformation about
X-linked conditions ends with Rare Rewritten.
Extensive medical research has shown, unequivocally, that women and girls frequently do develop physical symptoms associated with X-linked conditions.
Many resources* that provide medical information have been slow to catch up. Remember The Girls is here to speed up the process with our Rare Rewritten campaign.
*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.
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Here's what we're asking:
Ask #1
Describe the inheritance pattern as “X-linked” rather than using the terms “dominant” or “recessive” (the latter distinction many experts suggest is biologically inaccurate).
Ask #2
Avoid the term “carrier” in descriptions of X-linked inheritance—many females with X-linked conditions are symptomatic and not simply carriers.
Ask #3
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 drafted a letter to rewrite these wrongs.
Remember The Girls wrote a letter to send to organizations with medical websites that inaccurately represent X-linked inheritance and their impact on women and girls. In this letter, we ask them to rewrite the wrongs in correspondence with our three ‘asks’ and provide detailed, evidence-based explanations to support each point.
This letter was written with the help of our Medical Advisory Board and is backed by seven rare disease patient advocacy groups.
These are the recipients of our letter.
Here are the five medical websites we have chosen to send our letter to. We chose these websites because of their credibility among patients and providers.
OMIM®
OMIM® (Online Mendelian Inheritance in Man)
Comprehensive database that catalogs human genes and genetic disorders.
MedLine Plus
MedLine Plus
Online health information resource for patients and families, maintained by the U.S. National Library of Medicine, part of the National Institutes of Health (NIH).
https://medlineplus.gov/genetics/understanding/inheritance/inheritancepatterns/
https://medlineplus.gov/ency/article/002048.htm
https://medlineplus.gov/ency/article/002051.htm
JULY 22 UPDATE: MedlinePlus responded that they will review our information on X-linked conditions, particularly how they impact females, and make any necessary updates.
CHOP
Children’s Hospital of Pennsylvania (CHOP)
One of the most prestigious children’s hospitals in the world, its website provides resources for patients and families, clinicians, educators, and researchers.
https://www.chop.edu/conditions-diseases/x-linked-recessive-red-green-color-blindness-hemophilia
NHS England Genomics Education Programme
NHS England Genomics Education Programme
A national initiative in England designed to equip the current and future NHS workforce with the knowledge, skills, and confidence to integrate genomics into clinical care.
https://www.genomicseducation.hee.nhs.uk/genotes/knowledge-hub/x-linked-recessive-inheritance/
NIH National Cancer Institute
NIH National Cancer Institute
The U.S. government’s principal agency for cancer research and training, its website offers resources for patients & caregivers, researchers, and healthcare professionals.
https://www.cancer.gov/publications/dictionaries/genetics-dictionary/def/x-linked-recessive-inheritance
https://www.cancer.gov/publications/dictionaries/genetics-dictionary/def/x-linked-dominant-inheritance
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Rare Rewritten by Remember The Girls. All rights reserved.