Patients & families | The Marfan Foundation

Patients & families

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. We offer a wealth of information  for you and your loved ones about Marfan syndrome and related conditions, as well as special resources for children and teens. Our goal is to help you learn what you need to know quickly and support your next steps.

  • We can answer your questions by phone or email. Our help center is available Monday-Friday 9:00 AM to 5:00 PM Eastern Time. Contact the nurse in our help center at 800-8-MARFAN (800-862-7326), ext. 126, or on our Ask a Question page.
  • We can answer questions that you submit online.
  • We can help you find a doctor.
  • We provide a free and secure upgraded healthcare management tool, Backpack Health PRO, which is customized for our Marfan and related disorders community.
  • We offer fact sheets about various aspects of Marfan syndrome and related disorders and have an extensive video series that highlights the most commonly asked questions.
  • We offer phone and online support groups for families coping with Marfan syndrome and related disorders.
  • We can help you find local support.
  • 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 nations connective tissue experts are available each year and special age-appropriate programs are provided for children, teens, and young adults.
  • Our Facebook page and our online community offer an opportunity to connect with others affected by these conditions 365 days per year.

We hope you will take advantage of all we have to offer so that you will feel better educated, better supported, and better taken care of.

DISCLAIMER

The Marfan Foundation (the “ Foundation”) is a health advocacy organization. The Foundation does not provide medical advice or treatment. We are not a health care provider. It is important to realize that information provided by the Foundation is not meant as a replacement for proper care from a doctor, therapist, etc. Information provided by the Foundation is not a substitute for medical treatment or psychological care. It is vital that you talk with your health care providers regarding the diagnosis and treatment of Marfan syndrome and related disorders and your symptoms/features. Minors should consult with a parent/legal guardian when considering treatment and providers.

Health care provider information is supplied solely by the providers themselves and is not checked or warranted by The Marfan Foundation. The Foundaiton provides contact information for health care providers who are known to have seen patients with Marfan syndrome and related disorders. The Foiundation does not endorse or recommend individual health care providers. You are responsible for interviewing and selecting the practitioner. By requesting health care provider resources you understand and agree that the Foundation and its affiliates are not responsible for any providers’ services or lack thereof.

CONFIDENTIALITY

Except with your express consent or as permitted or required by law (or as otherwise stated in the website Privacy Statement), all information you provide is strictly confidential and never shared outside our organization. Not knowing who you are, where you live and the reason for your inquiry may limit, or even prevent, our ability to respond to your questions and concerns.