Remember The Girls

Female carriers of choroideremia (CHM) can have symptoms and there are numerous research studies to support that fact. Check out this research study published in January of this year: https://lnkd.in/e84aYCuz #CarrierConnections #NotJustCarriers

Thank you to Dr. Sena Gocuk for joining us for an episode on collectively coeXisting to discuss female carriers of X-linked retinal diseases including choroideremia and X-linked retinitis pigmentosa. Listen to her full interview here: https://lnkd.in/epEGh4-S

This month we are partnering with Choroideremia Research Foundation - Cure CHM to highlight choroideremia (CHM). CHM is a form of X-linked retinal degeneration.

This month as part of our Carrier Connections series, we are partnering with the Choroideremia Research Foundation - Cure CHM to bring you facts and interviews about choroideremia and how carriers may be impacted. Stay tuned! #Choroideremia #XLinked #NotJustCarriers

It's Rare Disease Day! We asked members of the Remember The Girls community why they are involved in rare disease research as females impacted by X-linked conditions. Here is what they had to say.???? #RareDiseaseDay #RememberTheGirls #NotJustCarriers #XLinked #RareDiseaseResearch

Do you have a knack for social media and a passion for helping females impacted by X-linked conditions? Remember The Girls is seeking an intern to assist with marketing, outreach, and social media for 5-8 hours a week. If you are interested, please email: [email protected]

Choroideremia and X-linked retinitis pigmentosa are together considered "X-linked retinal disease." #FactFriday

A recent article about disease burden of adrenoleukodystrophy (ALD) in females was recently published in Neurology. The study showed very high prevalence of neurological symptoms with the most common being urinary symptoms, walking difficulty, and spasticity. Thank you to ALD Connect for helping recruit for this study, and for the researchers for helping advance our understanding of females with ALD! https://lnkd.in/eMTHarGC

Our #FactFriday this week shows a difference in the onset of blindness between affected males and females.

For our Carrier Connections feature this month, we are highlighting X-linked retinitis pigmentosa (XLRP). Here is our first #FactFriday of the month.