There are many ways to get your questions answered and meet others in the community.
Our Help and Resource Center is staffed by a registered nurse who can help answer your questions Monday through Friday, 9 am to 5 pm Eastern time.
The Marfan Foundation has compiled an Institutional Directory, which is a great place to start if you are looking for a doctor knowledgeable about Loeys-Dietz syndrome.
There are several virtual support groups available which meet regularly through a virtual meeting platform.
Visit our webinar pages to see past medical and empowerment series webinar recordings and register for upcoming webinars.
Learn more about Loeys-Dietz syndrome by starting here.
Being prepared for an emergency is critical with Loeys-Dietz syndrome. Visit our emergency preparedness page to download important resources, like the Emergency Preparedness Kit and Card, as well as get information your doctor can put in your electronic health record.
The Marfan Foundation has created an extensive parent toolkit, filled with important information to help you care for children with genetic aortic and vascular conditions, including the brochures for School Nurses and Teachers.
Kids Club is a virtual social group for children ages 9-12 with Loeys-Dietz, Marfan, VEDS, or a related condition.
This is a teen group for teens ages 13-18 with Loeys-Dietz, Marfan, VEDS, or a related condition. Teens are invited to register to join in for a talk with other teens they can relate to.
This is a teen group for teens ages 13-18 with VEDS, Marfan, Loeys-Dietz, or a related condition. Teens are invited to register to join in the fun. We will be playing games using the Jackbox game series.
Children with Marfan, VEDS, and LDS can experience various camps in an environment that is safe for them. It also enables them to create connections with other kids who are just like them and form meaningful bonds that can last a lifetime.
Visit our research pages to learn about participating in a study and find studies actively seeking participants. If you are a researcher, you can also learn about our research grant program and find study participants.
