Circle of Care. Vision for a Cure.
From diagnosis to adulthood, you’re not navigating Lowe syndrome alone. The Lowe Syndrome Association (LSA) is a community of families, caregivers, and people with Lowe syndrome — together at every stage.
Start Here
Find Your Community
Find Your Community
Whatever stage you’re in, LSA is already here — a community of families, caregivers, people living with Lowe syndrome, and those carrying forward the memory of a son we’ve lost. Your story becomes part of ours.
Join our community for free
Caring for a Patient with Lowe Syndrome
Caring for a Patient with Lowe Syndrome
Lowe syndrome is a rare X-chromosome-linked disorder, and most clinicians have never encountered it. While it can be inherited, some cases result from a new (de novo) genetic change rather than being inherited from a carrier mother.
Get clinical resources
Accelerate Therapies for Tomorrow
Accelerate Therapies for Tomorrow
LSA supports translational research, drug repurposing, biomarker development, and clinical trials that move promising therapies from the lab toward clinical use.
Explore global Lowe syndrome research“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”
– Margaret Mead
-
2027 Lowe Syndrome Association Conference
We’re excited to return to the West Coast for the 2027 LSA Conference! Save the date, make your travel arrangements, and apply for a stipend to attend.
When Friday – Sunday June 25 – June 27, 2027 Where Marriott Long Beach Downtown
111 E Ocean Blvd
Long Beach, CA Learn More