Learning about Marfan syndrome & related disorders | The Marfan Foundation

The Marfan Foundation

Know the signs. Fight for victory.

Learning about Marfan syndrome & related disorders

Learning anything new is often challenging, and this is especially true when you are trying to learn about a complex medical condition. The words and concepts may be unfamiliar. Some of the details can be troubling. It can be difficult to know what to do with all the information you gather.

We're Here to Help

Individuals, family members, medical professionals, and other healthcare providers can access a wealth of information and resources about Marfan syndrome and related disorders. We can help you learn what you need to know quickly and support your next steps.

  • Our Help Center is available Monday-Friday 9:00 AM to 5:00 PM Eastern Time to answer your medical and social questions and help you find knowledgeable medical professionals. Contact the Help Center at 800-8-MARFAN (800-862-7326), ext. 126, or support@marfan.org.
  • We offer phone and online support groups for individuals and families coping with Marfan syndrome and related disorders.
  • Our active volunteer network provides social support for families who are dealing with Marfan syndrome and related disorders and raises awareness and funds to support our shared mission in local communities nationwide.
  • Our Annual Family Conference brings together the entire community for four days each year to learn about the latest research, get questions answered by the leading experts, and form new friendships. Free patient health assessments provided by the nation’s Marfan syndrome and related disorders experts are available each year and special age-appropriate programs are provided for children, teens, and young adults.
  • We offer special resources for children , teens , parents , teachers , nurses and other specialized groups year-round.
  • Our online community offer an opportunity to connect with others affected by these conditions 365 days per year.

Here are some steps you can take now to learn more:

  1. Begin with Marfan and Related Disorders for a basic overview, and follow the links provided for more in-depth information.
  2. Ask questions online at Ask a Question
  3. Call The Marfan Foundation Help Center at 800-8-MARFAN (800-862-7326), ext. 126. You will be able to speak with a nurse who can answer questions and send you additional information.
  4. Join our online community.