Custom GPT provides on-demand answers
The Marfan Foundation is pleased to announce the release of our new Marfan Foundation Community Companion – an AI tool that pulls information from across our websites and established aortopathy guidelines to help people living with Marfan, Loeys-Dietz, Vascular Ehlers-Danlos, Stickler syndromes and related conditions ask conversational questions in real-time and get immediate answers.
“As a member of the Marfan Foundation Board of Directors and a person who lives with Loeys-Dietz syndrome, I know firsthand that new questions pop-up for community members daily. A trained GPT just for us is a great tool for helping enhance quality of life. I’m proud that the Foundation is among the first organizations in the non-profit sector to embrace this sort of usage of AI: one with direct, instant benefit to people living with genetic aortic and vascular conditions,” said Andrew Toy, CEO, Clover Health, who served as volunteer advisor during creation of the Community Companion.
Empowering Community Members
Community Members can ask the Marfan Foundation Community Companion anything they’d like, from where to find expert providers near them, to how to sign-up for Foundation walks, social events, webinars and symposiums. Folks who ask questions are also referred to our Help & Resource Center where they can seek more specific information from our team of nurses and a bilingual services expert.
Patrick McGuire, who lives with Marfan syndrome and is a novice user of AI, took the Community Companion for a test drive. “I found the Community Companion very easy to use,” said McGuire. “The information provided was very good. It was often followed up with a query to see if I wanted more detail. I took advantage of this on a few occasions. It all flowed very conversationally.”
Clear Information, Fast
April Dawn Shinske, Chief Communications and Marketing Officer for the Foundation and lead author of the Companion, shares McGuire’s enthusiasm. “We’re excited to be leading the way among non-profits in leveraging AI to the advantage of our community. We’ve trained and tested this GPT for months. The tool has safeguards in place: it will not learn from conversations or the internet at large. Instead, it pulls answers from our Marfan Foundation and division websites – and established guidelines – to help community members learn more about their conditions.”
Multilingual Capabilities
With an eye-toward increasing health equity and access, members can ask the Community Companion questions in any language, and the tool will respond in the desired language.
“Not only does the multilingual aspect of the tool help us meet community members where they are domestically, it helps us to advance our work around the world by providing education and resources for anyone living with a genetic aortic and vascular condition in any corner of the globe,” said Eileen Novins, Chief Global Business Development Officer for the Marfan Foundation.
While the Marfan Foundation Community Companion is a wonderful leap forward in helping more people know as much as possible about the conditions the Foundation serves, it is designed to be an entry point not an all-encompassing answer. Likewise, as is the case with any form of AI at present, the tool can make mistakes – community members should always consult trusted medical providers.
Enhancing Conversations with Healthcare Providers
“No online tool is a substitute for expert medical advice. The Community Companion isn’t appropriate for seeking emergency help. However, what the tool can do is enable community members and their support networks to know a great deal more about their conditions through easy-to-understand conversations. Think of the Companion as powering search of our websites and established medical guidelines in a faster, easier way – similar to chatting with a really smart friend with a wealth of information to share,” said Shinske.
Toy said, “I see the Community Companion as a way community members can enhance conversations with healthcare providers through pre-appointment research, better educate loved ones, and so much more. I encourage everyone to try out this great new tool!”
McGuire views the Community Companion as a cross-generational asset. “In 1961, my parents went through a lot of hurdles before I was correctly diagnosed with Marfan. Knowledge about Marfan has vastly increased, in both depth and availability, since then. But, when I attended my first Walk for Victory this year, I couldn’t miss the number of young parents in attendance and their eagerness to learn more about their child’s condition and find more resources to support them. I think this will be a great, and easy to use, tool in their toolbox,” said McGuire.
Board Chair of the Marfan Foundation and its divisions Bert Medina said, “We envision a world where quality of life, longevity, and cures for all people with genetic aortic and vascular conditions are in reach. We work every day to help more people know as much as possible about their conditions, connect with others, and find meaningful ways to thrive on their own terms.”
“We hope the new Community Companion will empower additional people to know the signs and seek the earliest possible diagnoses, find helpful information that makes day to day life better, spark ideas for fruitful conversations with healthcare providers, and enable additional connection with Foundation resources, programs, events, and community,” said Medina.
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.