One of the most powerful things you can do for the Lowe syndrome community is share your child’s health information. With rare diseases, that data is often what moves research forward — and it starts with you.
Citizen Health: A New Way to Power Lowe Syndrome Research
The Lowe Syndrome Association (LSA) is partnering with Citizen Health to better understand Lowe syndrome. Going forward, Citizen Health will take the place of our traditional family surveys: when families join and choose to share their child’s de-identified medical information for research, it helps build new data sets and statistics about Lowe syndrome that benefit our entire community — from natural history insights to the data researchers need to design future studies and clinical trials.
For your family, the free platform gathers all of your child’s medical records from every provider into one secure place (currently available to U.S. families), and its AI advocate can help explain confusing forms, organize documents, and get answers from providers and agencies. (See Tiffany’s story for how one LSA family uses it every day.)
Citizen Health is SOC 2 certified, and your records are only shared for research with your explicit consent.
Your data belongs to you, and sharing it for research is always your choice.
Want more before you dive in? Citizen Health’s Lowe syndrome caregiver guide walks through first steps after diagnosis, building your child’s care team, school and therapy support, and insurance navigation — written for families, not clinicians.
The Lowe Syndrome Association improves the lives of persons with Lowe syndrome and their families by fostering communication, providing education, and supporting research.
Join Citizen Health today using the form below — every family who participates strengthens what we know about Lowe syndrome.
