LSA began with 15 families in 1983 who refused to navigate Lowe syndrome alone. Today, that community spans 39 U.S. states and 35 countries — and it is still built on the same principle: no family should face this diagnosis without people who truly understand it.
When you join LSA, you are joining something already in motion
“Membership was one of the best decisions we made for the health and well being of our son. It’s hard to find the words to describe the feeling of support we have as an LSA family.”
— Theresa Haugen, mother
Membership is free — because we believe every family affected by Lowe syndrome deserves access to this community, these resources, and this network, regardless of circumstance.
- Our digital newsletter, On The Beam, delivered directly to your inbox
- Medical and research updates, webinars, and timely communications delivered directly to you
- Connection to our social media and private parent/caregiver pages
- An invitation to participate in all LSA activities and events, including Zoom sessions and our biennial International LSA Conference
- Citizen Health — LSA’s partner platform that consolidates your child’s medical records in one place, uses AI built for rare disease to help you prepare for appointments, draft IEP documents, and navigate insurance appeals, and — when you choose to share your anonymized data — powers the natural history research that helps advance treatments for the entire Lowe syndrome community. Learn more about Citizen Health.
The LSA community is one of the most knowledgeable, generous, and determined rare disease communities in the world. Come be part of it.
Join for Free
Donate
Every dollar donated by LSA members is direct-to-mission — funding the biennual conference, peer support programs, and the research grants that advance what is known and what is possible for individuals with Lowe syndrome. The future of this community is in our hands, together.
On The Beam
On The Beam has been the LSA community’s voice since 1983 — featuring research updates, family stories, medical resources, and news from across the LS world. As a member, every issue comes directly to you.
New Members
The LSA does not share member contact information in any form and members can unsubscribe from our communications at any time. If you already receive LSA email communications and would like to update your email address, please contact the LSA at lsa-admin@lowesyndrome.org.