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
Remember The Girls
民间和社会团体
Mt Laurel,New Jersey 1,024 位关注者
Nonprofit organization aiming to break the stigma facing females impacted by X-linked conditions.
关于我们
Remember The Girls aims 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.
- 网站
-
https://rememberthegirls.org
Remember The Girls的外部链接
- 所属行业
- 民间和社会团体
- 规模
- 1 人
- 总部
- Mt Laurel,New Jersey
- 类型
- 非营利机构
- 创立
- 2017
地点
-
主要
114 Preakness Dr
US,New Jersey,Mt Laurel,08054
Remember The Girls员工
-
Meghan Kofod
Results-driven Marketing & Communications Professional | Strategist, Implementor, Storyteller
-
Julie Cohen
Director of Genetic Counseling Services at Kennedy Krieger Institute
-
Tanner Coleman
Certified Genetic Counselor at HudsonAlpha Institute for Biotechnology
-
Taylor Kane
Adrenoleukodystrophy & rare disease patient engagement consultant
动态
-
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
-
-
-
-
-
+15
-
-
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.
-