Connective Issues Winter 2026

On-Demand ANSWERS for the Marfan Community

Introduced in the fall of 2025, the Marfan Foundation Community Companion is a new AI-powered tool designed to help people living with Marfan, Loeys-Dietz, VEDS, Stickler, and related conditions find trusted information— quickly and conversationally. The Community Companion pulls from across the Foundation’s websites and established aortopathy guidelines, allowing community members to ask real-time questions and receive immediate, easy-to understand responses. Whether searching for expert healthcare providers, learning about Foundation support groups or events, or exploring educational webinars and symposiums, the tool serves as a new entry point to reliable

“It all flowed very conversationally and made it easy to learn more.” ~Patrick McGuire

resources. Users are also guided to the Foundation’s Help & Resource Center for personalized support from nurses and bilingual sta ff . Foundation board member Andrew Toy, who lives with Loeys-Dietz syndrome and served as a volunteer advisor

during development, sees the tool as a meaningful step forward for the community.

 Andrew Toy (left) and  Patrick McGuire (above)

“New questions pop up for community members daily,” Andrew said. “A trained AI tool created specifically for our community can help enhance quality of life. I’m proud that the Foundation is among the first nonprofits to use AI in a way that delivers direct, immediate benefit.” Community member Patrick McGuire, who lives with Marfan syndrome, tested the new resource and found it intuitive and engaging. “I found the Community Companion very easy to use,” he said. “The information was very good, and it often prompted follow-up questions that helped me learn more.” The tool was developed and

or the internet at large; instead, it draws solely from Foundation content and established medical guidelines. The Companion is designed to support, not replace, medical care. The Community Companion also o ff ers multilingual capabilities, allowing users to ask questions in any language and receive responses in kind, helping expand access and advance health equity worldwide. While not intended for emergency situations or medical diagnosis, the Community Companion empowers individuals and families to better understand their conditions, prepare for conversations with healthcare providers, and connect more deeply with Foundation programs and resources—helping more people to know, connect, and thrive.

tested over several months with safeguards in place. It does not learn from conversations

Tryout the Community Companion at Marfan.org/communitycompanion Take a video tour of the Community Companion

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