Remember the Girls
Females who are affected by x-linked recessive genetic disorders have traditionally been deemed to be “just carriers” who are completely unaffected by the disorder. However, for many x-linked recessive disorders (which in actuality are not truly recessive), this is simply untrue. In addition to the fact that female carriers may pass the disorder along to their offspring, many female carriers may develop physical symptoms of the disorder, however the medical community often fails to connect these symptoms to their carrier status, subjecting these women to many years of physical problems they should not have to tolerate. This can be frightening and lonely.
There has long been a gender bias in medicine, with males being predominately enrolled in clinical trials. Most studies that did include women did not report results by gender. Although this has begun to change in recent years, there is still an enormous lack of scientific research and understanding when it comes to carriers of x-linked disorders. Remember the Girls works to create a community of females affected by x-linked disorders to break away from the “carrier” stigma. While it is extremely important to continue searching for treatments and cures for males with x-linked disorders, it is also important to study the effect of these disorders on female carriers, so they too have the opportunity to live a full and healthy life.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Remember the Girls
Patient Worthy Posts on X-Linked Genetic Disorders
Hemophilia A is the most common type of hemophilia, accounting for 8 of every 10 cases. Treatment in the past consisted of the administration
According to a story from BioSpace, the US Food and Drug Administration (FDA) has recently approved the drug golodirsen (marketed as Vyondys 53) as a
According to a story from biopharmadive.com, the race to a hemophilia A gene therapy continues to tighten following a recent release of early data from
By Caitlin Seida from In The Cloud Copy People living with the severe hemophilia A may soon see a new treatment option available thanks to
A new precision medicine center, specifically for pediatrics, has launched in Utah. This new center is the result of collaborative efforts from the Intermountain Primary