about us
Programs
We offer a range of thoughtfully designed programs that address the evolving needs of our community. Through education, direct support, and outreach initiatives, we provide individuals and families with the tools to thrive. Our work is rooted in equity, collaboration, and the belief that everyone deserves access to opportunity.
Annual Conference
The FSIG Annual Conference is where our passionate community comes together — patients, families, doctors, and researchers — all united by a common goal. Over three unforgettable days, we’ll learn from one another, share personal journeys, and tackle the biggest challenges in Fabry care. Whether you’re joining us for informative sessions, hands-on workshops, or meaningful conversations, this conference is your space to connect, grow, and inspire.
Fabry Assist
The Fabry Assist program provides financial support to individuals living with Fabry disease in the United States who need help in areas other programs may not cover. Since 2010, FSIG has responded to hundreds of requests, offering assistance with essential needs such as transportation to Fabry appointments or patient meetings, cooling vests, diagnostic testing, Fabry-related medical bills, and non-pharmacy medical expenses like compression garments, eyewear, dentures, and hearing aids. By addressing these unmet needs, Fabry Assist helps ensure that patients receive the care, resources, and support necessary to manage their health and improve their quality of life.
Cooling Vests
Our Cooling Vest Program provides customized cooling vests to individuals living with Fabry disease, offering practical support for managing heat intolerance and improving daily comfort. Because many people with Fabry struggle with impaired sweating and difficulty regulating body temperature, these tailored vests give patients a safe and effective way to stay cool during everyday activities, exercise, and warm weather. By delivering vests at no cost to the patient and ensuring each one is fitted to their needs, we help empower the Fabry community with a simple, meaningful tool that enhances quality of life and supports better overall care.
FSIG Connection Newsletter
Published three times a year, FSIG Connection brings together the voices and experiences that make our Fabry community strong. Every issue shares heartfelt patient stories, highlights the dedication of clinicians in our physician spotlight, and offers helpful articles, updates, and news. It’s a place to learn, reflect, and stay connected to what’s happening across FSIG and the broader Fabry community.
Regional Meetings
FSIG’s Regional Meetings offer small, local gatherings in communities across the country, giving patients, families, and caregivers a chance to connect, learn, and support one another. These meetings feature educational sessions, interactive discussions, and opportunities to meet Fabry experts in a welcoming, intimate setting. By bringing people together closer to home, FSIG’s Regional Meetings foster meaningful connections, share vital resources, and strengthen the Fabry community nationwide.
Women's Summit
The FSIG Women’s Summit celebrates and empowers women touched by Fabry disease—both those living with the condition and the incredible caregivers who support them every day. This gathering offers a space to learn, share, and connect through inspiring sessions, hands-on workshops, and meaningful conversations. Attendees leave feeling informed, uplifted, and strengthened by a community of women who understand the unique challenges and triumphs of Fabry life. The summit is more than education—it’s a celebration of resilience, connection, and the power of women supporting women.
Mark your calendars! The 2026 Women's Summit will be held in Minneapolis, MN October 16-18, 2026. More information coming soon!
Young Adult Roundtable
The FSIG Young Adult Roundtable brings together young adults living with Fabry disease for honest conversations, shared stories, and mutual encouragement. This program creates a safe, supportive space where participants can explore the challenges and opportunities of school, work, relationships, and health. By connecting peers who truly understand one another, the roundtable strengthens community and helps young adults feel seen, supported, and empowered.
