by Remember The Girls | May 13, 2025 | Updates
Uniting women with X-linked disorders to prompt change Written by G Shellye HorowitzPosted 04-22-2025 “We are more than symptomatic carriers, we have hemophilia, too!” a large group of women shouted when I attended the first National Conference for Women with...
by Remember The Girls | Apr 4, 2025 | Updates
Statement of Support Written by Taylor KanePosted 04-04-2025 Our goal at Remember The Girls, first and foremost, is to bring together and support women and girls impacted by X-linked diseases. We understand there may be members of our community, both in the United...
by Remember The Girls | Nov 18, 2024 | Community
ALD: Beyond the Diagnosis Written by Remember The GirlsPosted 11-17-2024 Watching as her father’s mobility and memory deteriorated before her eyes, Dawn was no stranger to the devastating effects of what she attributed to her father’s progressing age. As her father’s...
by Remember The Girls | Jun 11, 2024 | Community
A Beacon of Hope for Rare Disease Parents Written by Faith CosgrovePosted 06-11-2024 Her sunny disposition and cheeky sense of humor may give the impression that Maddy has had an easy hand in life. However, beneath this jubilant exterior is a woman who has undergone...
by Remember The Girls | May 30, 2024 | Community
Theresa’s Story:”It took me thirty years to get the diagnosis of myotubular myopathy” Written by TheresaPosted 05-30-2024 Theresa is 67-years-old and impacted by myotubular myopathy (MTM). She learned about MTM 6 years ago after originally being...
