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.*
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.
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.
Raise a glass with us at UnCorked, our annual wine tasting fundraiser, on Monday, November 11th, from 6:00–9:00 PM at The Metropolitan Club. Together, we’ll enjoy a memorable evening while supporting the life-saving mission of The Marfan Foundation—bringing hope and brighter futures to those affected by Marfan syndrome, Loeys-Dietz syndrome, VEDS, and related genetic aortic and vascular conditions. Cheers to connection, community, and a future full of hope!
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.
Empowered Relief® is a one-time class that equips individuals with essential pain relief skills in just 2.5 hours. Participants apply the skills and tools to create their personalized plan. Applied daily at home, the personalized plan helps participants master the skills. Multiple published studies show Empowered Relief® helps reduce pain and pain impacts on activity, mood, anxiety and sleep up to 6 months after taking the class.
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.
You are invited to join us for a special evening at the 5th Annual Houston HeartWorks Gala on Friday, November 14 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.
Guests will enjoy cocktails, dinner, live entertainment, and great company! We will also recognize deserving individuals who have made significant contributions to our community.
In this interactive webinar, music therapist and mindfulness practitioner Katelyn “Katey” Kratz, LPMT, MT-BC—who is herself living with Loeys-Dietz Syndrome—will explore how music and mindfulness can support resilience, relaxation, physical wellness, stress reduction, emotional well-being, and beyond. Participants will learn what music therapy is, how to access qualified music therapists, and simple, practical ways to integrate music and mindfulness practices into daily life. The session will also include opportunities to experience and engage in live music-based interventions, offering a space for reflection, growth, connection, and calm.
This support group is for people with Loeys-Dietz syndrome or a related conditions who are interested in exploring various ways to deal with pain.
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 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
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.
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 LDS International Connect is a support group for any person living with Loeys-Dietz Syndrome, as well as parents and caregivers of people with Loeys-Dietz Syndrome. This group is intended for community members living outside of the United States. It is conducted in English. The LDS International Connect meets on the 4th Monday of each month at 2 pm EST.
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 Marfan Foundation and Cincinnati Children’s Hospital Medical Center 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 also have their condition.
Join us for this exciting opportunity to meet other families impacted by Marfan, VEDS, Loeys-Dietz, and related syndromes. Have fun with your entire family, participating in traditional camp activities in a safe, 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. To apply for financial support, please click here.
Scholarship applications for this camp are due September 1.
Registration Cut-off Date: September 26
Thank you to our CA Camp Victory sponsor:
This support group is for people with Loeys-Dietz syndrome or a related conditions who are interested in exploring various ways to deal with pain.
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 the Northern IL Chapter for outdoor fall fun for the whole family with a hayride, bonfire, and cookout!
Enjoy a fall afternoon together in Naperville at Knoch Knolls Nature Center! We’ll start with a hayride while sipping hot chocolate and apple cider. The Northern IL Chapter will supply hot dogs and ingredients for making s’mores around a bonfire. Please feel free to bring your own non-alcoholic drinks and snacks to enjoy. You can bring chairs/blankets or use the park’s picnic tables and covered pavilion. Cost is FREE to our members! So we know how much food to bring, RSVP with the number of people attending to illiniosgroup@marfan.org or 630-803-6246 no later than Monday, October 13th. If the weather does not cooperate, we will meet at the Portillo’s in Naperville
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.
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.
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.
In honor of those who observe Yom Kippur, we are changing the dates of the two support groups initially scheduled during the holiday. Please note the following date change: Marfan Connect has been moved to October 9 at the usual time.
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.
This support group is for people with Loeys-Dietz syndrome or a related conditions who are interested in exploring various ways to deal with pain.
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 LDS International Connect is a support group for any person living with Loeys-Dietz Syndrome, as well as parents and caregivers of people with Loeys-Dietz Syndrome. This group is intended for community members living outside of the United States. It is conducted in English. The LDS International Connect meets on the 4th Monday of each month at 2 pm EST.
Join us for this exciting opportunity to meet other families impacted by Marfan, VEDS, Loeys-Dietz, and related syndromes. Have fun with your entire family, participating in traditional camp activities in a safe, 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. To apply for financial support, please click here.
Scholarship applications for this camp are due July 28.
Registration Cut-off Date: August 22
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.
Together, we celebrate community! Meet and reconnect with friends who really understand life with Marfan, LDS, VEDS, and related conditions. Together, we raise awareness and help families get the best medical care from leading experts. Together, we help fund events and programs that improve the lives of our community: support groups, symposiums, conferences, Camp Victory for kids, life-saving research, and more!
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.
