Around the world, doctors, researchers, and families affected by COL4A1/A2-related disorders, known as Gould Syndrome, had no central place to turn. The Gould Syndrome Foundation was founded in 2024 to be that place, connecting the global community and moving research forward.
We focus on four things: research, advocacy, education, and awareness.
Today, we’re led by a volunteer board and run entirely by volunteers who live with Gould Syndrome or love someone who does. Our work is shaped by listening to families, doctors, and researchers. We’re transparent about who we are, how we make decisions, and how gifts are used.
What we do
Advance research by collaborating with researchers, clinicians, patient organizations, and our Scientific and Medical Advisory Board around the world
Help families with one-on-one support, our patient-recommended clinician map, and Clinical Recommendations, reviewed by leading Gould Syndrome specialists
Build and connect our community through our Facebook group, community meetings, webinars, and events like the International COL4A1/A2 Conference, which we hosted in Boston in 2026
Keep families informed by creating and sharing resources, from the latest research to educational videos like Gould Talks, through our newsletter, website, and social media
EMPOWERING HOPE, ADVANCING DISCOVERY
Core values
Community first. Patients and families are at the center of everything we do.
Collaboration. Progress goes further when researchers, clinicians, families, and partner organizations work together.
Transparency. We share what’s known, what isn’t, what we’re working on, and what donations go toward.