To see a full list of our Support Group offerings, please click here.
*Please be sure to check our online calendar for any scheduling changes.*
Our theme this year is "More" highlighting the ways that members of the community are "more" than their LDS diagnoses in their own words, how empowering it is to learn "more" about LDS management, and how we are so much more when we unite to raise awareness as a community together!
Join us for a virtual game night! Teens ages 13-18 are invited to register to join in the fun. We will be playing games using the Jackbox game series.
This group is for adults (under 50) with Marfan syndrome or a related condition. Participants have the opportunity to connect with others with a similar diagnosis for support and sharing of resources and information. If you are over 50, please register for the 50+ group.
The group meets on the first Thursday of every month from 5-6pm ET.
Rooted and Resilient: Mindfulness Tools for LDS Advocates is an empowering webinar designed to support individuals and advocates within the Loeys-Dietz Syndrome (LDS) community. Led by music therapist and mindfulness practitioner Katelyn “Katey” Kratz, LPMT, MT-BC—who is herself living with Loeys-Dietz Syndrome—this session explores practical, accessible ways to cultivate resilience in the face of chronic illness and advocacy work.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.
Join others in our connective tissue condition communities to share concerns and discuss issues related to everyday life. You will feel supported, heard, and enjoy the time spent with others.
Have you lost a loved one to Marfan syndrome or a related condition? Grief is a long and difficult process. Everyone experiences grief differently, but talking with others who can relate to what you are going through can be very helpful. If you have lost a loved one to Marfan syndrome or a related disorder and would like to connect with others who know what you are going through, please sign up for this group.
Have you been diagnosed with Loeys-Dietz syndrome? This group is a space to talk and connect with people in the community and share what you’re going through with others who understand. The group meets on the second Thursday of every month from 7-8 pm ET.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.
Teens Together: A Night to Chat is a place for Teens ages 13-18. Join this virtual get-together to become a part of the conversation. Get to know other teens who with Marfan, LDS, VEDS, and related conditions to talk about life, laugh, and everything in between.
Please join us for a webinar on aortic emergencies that is geared toward people living in Australia and New Zealand. Dr. Michelle Lim, a member of the Foundation's Genetic Aortic Network Education Working Group, leads this effort for Aussies and Kiwis. The featured speakers are Dr. Benjamin Robinson, Consultant Cardiothoracic Surgeon at Royal Prince Alfred Hospital, and Dr. Geoffrey Lester, an aortic dissection survivor who is a vascular and internal medicine physician, researcher, health economist, and the head of Think Aorta Australia and New Zealand. Learn from the experts and have your questions answered.
Join us for the Kids Club, a virtual social group for children ages 9-12 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction and connection with others who have a similar diagnosis.
We are delighted to present A Lunch with Heart Palm Beach, a sophisticated new addition to The Marfan Foundation’s signature events.
Join us at Salute Ristorante Palm Beach on Wednesday, March 18, 2026, from 11:30 AM to 2:30 PM for cocktails, a seated lunch, and an exclusive pop-up boutique from Fivestory Palm Beach.
We are honored that Karen Murray, whose leadership created our most longstanding and successful gala, Heartworks NYC, will serve as Event Chair for this special luncheon.
This elegant gathering brings our community together to support individuals and families affected by Marfan syndrome and related genetic aortic conditions.
Sponsorships and tickets are available below — select the level that allows you to celebrate, support, and make a difference while enjoying a truly unforgettable experience.
Are you are a parent or guardian of a child with Marfan syndrome, Loeys-Dietz syndrome or a related connective tissue condition? Is your child 18 years old and younger? If so, we invite you to join other parents to discuss the challenges of raising a child with one of these conditions.
Conexiones: Grupo de apoyo virtual para establecer conexiones con otras personas que tienen condiciones del tejido conectivo. (impartido en español). Una vez al mes.
Presentado por Kathleen Bolton del Centro de Ayuda y Recursos, fundación Marfan
El grupo se reúne el tercer miércoles de cada mes de 7:30 a 8:30 p.m., hora del este.
Are you or a loved one recently diagnosed with Loeys-Dietz syndrome or a related condition? Are you or a loved one seeking diagnosis? If you would like to connect with others who are just starting out on this medical journey, this group is for you.
For the first time, the Loeys-Dietz Syndrome Foundation Canada and the Loeys-Dietz Syndrome Foundation – a division of the Marfan Foundation – are joining forces to bring you real talk about LDS from those with lived experience. Join four community members – two from the United States and two from Canada – for this dynamic moderated discussion. Registration is free but required. Your advance questions to brandcomms@marfan.org are most welcome!
Please note: registrant information will be shared with both the Canadian and U.S. Loeys-Dietz Foundations for practical considerations around this joint event. Review our privacy policies: LDSF Canada and LDSF (U.S.)
Wear Blue, Give Green! Join us for LDS Awareness Day of Giving.
Are you diagnosed with Marfan syndrome or a related condition? Are you 50 years old or older? Would you like to connect with others in your age group? If so, this group is for you.
A variant of uncertain significance (VUS) is a common genetic test result, but one that often raises more questions than answers.
In this webinar, Bart Loeys, MD, PhD, from the Center of Medical Genetics Antwerp and a member of the Marfan Foundation’s professional advisory board, will explain what a VUS is, why these results occur, and how they are interpreted for conditions such as Marfan syndrome, Loeys-Dietz syndrome, VEDS, and Stickler syndrome.
Attendees will learn how VUS results are monitored over time, when (and if) they may be reclassified, and how healthcare professionals use this information to guide care and next steps.
Registration is free but required.
Have you been diagnosed with Marfan syndrome, VEDS, Loeys-Dietz syndrome or another related condition? Are you between the ages of 18 and 30? Would you like to connect with others in your age group? If so, this support group is for you.
The Marfan Foundation and Norton Children’s Heart Institute present an educational opportunity for individuals and families living with Marfan, Loeys-Dietz, VEDS, and related conditions. This informative and engaging event will provide the latest updates on treatment and quality of life issues, and includes opportunities to network with the speakers and connect with other people in the area who are also living with these conditions.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids’ activities, and a short, non-competitive walk.
Insights from the LDS Natural History Study at NIH: Audiology and Otology offers an in-depth look at hearing and ear-related findings emerging from the Loeys-Dietz Syndrome (LDS) Natural History Study conducted at the National Institutes of Health. This webinar will be led by NIH experts Dr. Jeffrey Kim, D.D.S and Julie Christensen, M.S., who will share current insights into audiology and otology as they relate to individuals living with LDS.
Have you been diagnosed with Loeys-Dietz syndrome? This group is a space to talk and connect with people in the community and share what you’re going through with others who understand. The group meets on the second Thursday of every month from 7-8 pm ET.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids’ activities, and a short, non-competitive walk.
Invitiamo i pazienti e le loro famiglie a partecipare a un simposio virtuale con presentazioni, in italiano, dedicate alle sindromi di Marfan, Loeys-Dietz, Ehlers-Danlos vascolare (VEDS) e Stickler. Gli interventi si concentreranno sull'esercizio fisico e l'attività motoria, sull'immagine corporea e l'autostima, sulla pianificazione familiare e su altri temi di carattere medico. Inoltre, è previsto un panel in cui alcune persone condivideranno le proprie esperienze di vita personali con queste condizioni, raccontando ciò che le ha aiutate nel loro percorso.
La Marfan Foundation offre questa opportunità formativa a titolo gratuito. Per ottenere il collegamento Zoom, è richiesta la registrazione.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.
The Memorable Moments Luncheon is a special event designed to highlight and celebrate significant programs that make a difference in the community. Led by Co-Chairs Alix Jennings & Barbara Lerman, the luncheon will highlight three key programs: Camp Victory, The Marfan Foundation Annual Conference, and The Sydney Lerman Hospitality Program. This luncheon aims to bring together supporters, volunteers, and stakeholders to share the impact these initiatives have had and continue to have in the community. Throughout the event, attendees will learn about the successes, stories, and future goals of these programs while enjoying a memorable and inspiring gathering. The luncheon promises to be an opportunity for connection, reflection, and hope, as well as a way to support and celebrate these important causes.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids’ activities, and a short, non-competitive walk.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids’ activities, and a short, non-competitive walk.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids’ activities, and a short, non-competitive walk.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids’ activities, and a short, non-competitive walk.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids’ activities, and a short, non-competitive walk.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.
Don’t miss out on this opportunity for your child/children, ages 7-16, to attend Camp Victory for Kids. This five-night camp is designed for kids with Marfan, VEDS, Loeys-Dietz, and related syndromes and their siblings to participate in a traditional overnight camp in a safe and accessible setting. Give your kid(s) the gift of friendship, independence, and memories to last a lifetime.
Thanks to the support of our generous donors, including Camp Twin Lakes, registration fees have been significantly discounted. Scholarships are available to cover the registration fee, which includes lodging, meals, and activities.
Registration and scholarship applications coming soon!
Don’t miss out on this opportunity for your child/children, ages 7-16, to attend Camp Victory for Kids. This five-night camp is designed for children with Marfan, VEDS, Loeys-Dietz, and related syndromes, as well as their siblings, to participate in a traditional overnight camp in a safe and accessible setting. Give your kid(s) the gift of friendship, independence, and memories to last a lifetime.
Thanks to the generosity of our donors, registration fees have been significantly discounted. Scholarships are available to cover the cost, which includes lodging, meals, and activities.
Registration and scholarship applications coming soon!
Join us for this exciting opportunity to meet other families impacted by Marfan, VEDS, Loeys-Dietz, and related syndromes. Enjoy your time with your entire family, participating in traditional camp activities in a safe and accessible environment. Registration fees have been significantly discounted thanks to the support of our generous donors, including Camp Twin Lakes. Scholarships are available to cover the registration fee, which includes lodging, meals, and activities.
Join us for this exciting opportunity to meet other families impacted by Marfan, VEDS, Loeys-Dietz, and related syndromes. Enjoy your time with your entire family, participating in traditional camp activities in a safe and accessible environment.
Registration fees have been significantly discounted thanks to the support of our generous donors, especially Keck Medicine of USC Cardiac and Vascular Institute. Scholarships are available to cover the registration fee, which includes lodging, meals, and activities.
Registration and scholarship applications coming soon!
How to Read a Genetic Testing Report: A Practical Guide for Individuals and Families
Join the Marfan Foundation and its divisions on February 25 at 7:00 p.m. ET for an overview of how to read and understand a genetic testing report for individuals with Marfan, LDS, VEDS, Stickler, and other genetic aortic and vascular conditions.
Peter Byers, MD, Founder and Director of the Collagen Diagnostic Laboratory at the University of Washington and a member of the Marfan Foundation’s professional advisory board, will explain the key components of a typical report, define common vocabulary, and demystify how genetic variants and mutations are described.
Attendees will learn about the different classifications, what information to focus on, and how to interpret results in a meaningful way.
This webinar is free to attend but registration is required.
Do you ever wonder what's normal for the aorta and what's due to a genetic aortic condition? If you were unable to join us for the live webinar on Lifecycle of the Aorta, here is another chance to view the webinar and ask questions as Dr. Elena Cervi, from the Great Ormond Street Hospital in London, will be joining us LIVE.
Have you been diagnosed with Marfan syndrome, VEDS, Loeys-Dietz syndrome or another related condition? Are you between the ages of 18 and 30? Would you like to connect with others in your age group? If so, this support group is for you.
Please join us for a webinar on the Lifecycle of the Aorta, a presentation from the Genetic Aortic Network, a division of The Marfan Foundation. Do you ever wonder what's normal for the aorta and what's due to a genetic aortic condition? This webinar will focus on the aorta from childhood, through adulthood, and into the senior years. The presenters are Dr. Glen Iannucci, Children's Hospital of Atlanta, Dr. Michelle Lim, Central Sydney Cardiology (Australia), and Dr. Juan Bowen, Mayo Clinic/Rochester, MN. In addition to the presentations, there will be plenty of time to ask questions.
Join us for a special evening at the Chicago HeartWorks Gala on Friday, February 20, as we come together to support the life-saving mission of The Marfan Foundation and build a brighter future for our loved ones affected by Marfan syndrome, Loeys-Dietz syndrome, VEDS, and related genetic aortic and vascular conditions
Are you diagnosed with Marfan syndrome or a related condition? Are you 50 years old or older? Would you like to connect with others in your age group? If so, this group is for you.
Are you or a loved one recently diagnosed with Loeys-Dietz syndrome or a related condition? Are you or a loved one seeking diagnosis? If you would like to connect with others who are just starting out on this medical journey, this group is for you.
Conexiones: Grupo de apoyo virtual para establecer conexiones con otras personas que tienen condiciones del tejido conectivo. (impartido en español). Una vez al mes.
Presentado por Kathleen Bolton del Centro de Ayuda y Recursos, fundación Marfan
El grupo se reúne el tercer miércoles de cada mes de 7:30 a 8:30 p.m., hora del este.
Are you are a parent or guardian of a child with Marfan syndrome, Loeys-Dietz syndrome or a related connective tissue condition? Is your child 18 years old and younger? If so, we invite you to join other parents to discuss the challenges of raising a child with one of these conditions.
Join us for the Kids Club, a virtual social group for children ages 9-12 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction and connection with others who have a similar diagnosis.
Teens Together: A Night to Chat is a place for Teens ages 13-18. Join this virtual get-together to become a part of the conversation. Get to know other teens who with Marfan, LDS, VEDS, and related conditions to talk about life, laugh, and everything in between.
Join others in our connective tissue condition communities to share concerns and discuss issues related to everyday life. You will feel supported, heard, and enjoy the time spent with others.
Have you been diagnosed with Loeys-Dietz syndrome? This group is a space to talk and connect with people in the community and share what you’re going through with others who understand. The group meets on the second Thursday of every month from 7-8 pm ET.
Have you lost a loved one to Marfan syndrome or a related condition? Grief is a long and difficult process. Everyone experiences grief differently, but talking with others who can relate to what you are going through can be very helpful. If you have lost a loved one to Marfan syndrome or a related disorder and would like to connect with others who know what you are going through, please sign up for this group.
Join others in our connective tissue condition communities to share concerns and discuss issues related to everyday life. You will feel supported, heard, and enjoy the time spent with others.
Join others in our connective tissue condition communities to share concerns and discuss issues related to everyday life. You will feel supported, heard, and enjoy the time spent with others.
This group is for adults (under 50) with Marfan syndrome or a related condition. Participants have the opportunity to connect with others with a similar diagnosis for support and sharing of resources and information. If you are over 50, please register for the 50+ group.
The group meets on the first Thursday of every month from 5-6pm ET.
Join us for a virtual game night! Teens ages 13-18 are invited to register to join in the fun. We will be playing games using the Jackbox game series.
Join us as we spread awareness and raise funds to support The Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk.
Have you been diagnosed with Marfan syndrome, VEDS, Loeys-Dietz syndrome or another related condition? Are you between the ages of 18 and 30? Would you like to connect with others in your age group? If so, this support group is for you.
Direct-to-consumer genetic testing can offer interesting insights into ancestry and common traits, but may fall short when it comes to identifying hereditary conditions like Marfan, VEDS, LDS, and Stickler.
During this webinar, Maya Brown-Zimmerman, MPH, MS, CGC, a cardio genetic counselor at Norton Children’s Hospital, will break down the key limitations of consumer genetic tests, including the possibility of inaccurate results and a lack of medical interpretation. Attendees will learn when clinical genetic testing is necessary, what comprehensive testing looks like, and how working with geneticists and genetic counselors can lead to an accurate interpretation of test results and appropriate follow-up care.
nvitamos a pacientes y sus familias a unirse a nosotros en un día educativo sobre el síndrome de Marfan, el síndrome de Loeys-Dietz y el síndrome vascular de Ehlers-Danlos (VEDS). La cumbre de este año contará con presentaciones sobre los últimos avances en investigación y genética/planificación familiar. Además, expertos locales hablarán sobre cómo obtener atención médica en España, México, Colombia, Chile y Argentina. Además habrá espacio para responder sus preguntas. La Fundación Marfan ofrece esta cumbre de manera completamente gratuita. Será totalmente virtual y transmitida en línea, para que pueda acceder desde cualquier lugar del mundo. El enlace de Zoom se enviará después de registrarse.
Conexiones: Grupo de apoyo virtual para establecer conexiones con otras personas que tienen condiciones del tejido conectivo. (impartido en español). Una vez al mes.
Presentado por Kathleen Bolton del Centro de Ayuda y Recursos, fundación Marfan
El grupo se reúne el tercer miércoles de cada mes de 7:30 a 8:30 p.m., hora del este.
Are you are a parent or guardian of a child with Marfan syndrome, Loeys-Dietz syndrome or a related connective tissue condition? Is your child 18 years old and younger? If so, we invite you to join other parents to discuss the challenges of raising a child with one of these conditions.
Join us for the Kids Club, a virtual social group for children ages 9-12 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction and connection with others who have a similar diagnosis.
Teens Together: A Night to Chat is a place for Teens ages 13-18. Join this virtual get-together to become a part of the conversation. Get to know other teens who with Marfan, LDS, VEDS, and related conditions to talk about life, laugh, and everything in between.
Are you diagnosed with Marfan syndrome or a related condition? Are you 50 years old or older? Would you like to connect with others in your age group? If so, this group is for you.
Are you or a loved one recently diagnosed with Loeys-Dietz syndrome or a related condition? Are you or a loved one seeking diagnosis? If you would like to connect with others who are just starting out on this medical journey, this group is for you.
Have you lost a loved one to Marfan syndrome or a related condition? Grief is a long and difficult process. Everyone experiences grief differently, but talking with others who can relate to what you are going through can be very helpful. If you have lost a loved one to Marfan syndrome or a related disorder and would like to connect with others who know what you are going through, please sign up for this group.
Join others in our connective tissue condition communities to share concerns and discuss issues related to everyday life. You will feel supported, heard, and enjoy the time spent with others.
