Where can I find a doctor who knows about Vascular EDS?
VEDS-specific care is currently a challenge for the community, as not many providers have expertise in caring for an individual with VEDS.
We recommend contacting our Help & Resource Center to be connected to a knowledgeable care center or physician.
You can also download a list of institutions who have self-reported they have provided care for individuals with Vascular EDS.
You can contact our Help & Resource Center at:
(800-862-7326) ext. 126 or on our Ask a Question page.
You can also attend Annual Conference and apply for a free health assessment for diagnosis and specific VEDS issues from the nation’s experts.
Help The VEDS Movement Build a Physicians List
As many know, finding a good physician is hard. If you have a physician in any specialty who has been very helpful to you, or has shown interest in learning about VEDS, please let us know their name and contact information. We will ask them for permission to publicize their name for others in need of care. Please send information through our Ask a Question form.
What other resources are available?
- The American College of Medical Genetics has a medical genetics database you can use to find a knowledgeable geneticist in your area. Helpful search terms include: connective tissue, bone/skeletal disorders, cardiovascular/connective tissue, adult congenital heart disease, adult medical genetics, pediatric genetics, and genetics counseling.
- The cardiology, vascular, or genetics department of a university medical center or teaching hospital may also be able to provide expertise.
DISCLAIMER
The VEDS Movement, a division of The Marfan Foundation (the “Foundation”), is a health advocacy organization. The Foundation does not provide medical advice or treatment. We are not a healthcare 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 healthcare providers regarding the diagnosis and treatment of Marfan syndrome and related conditions and your symptoms/features. Minors should consult with a parent/legal guardian when considering treatment and providers.
Healthcare provider information is supplied solely by the providers themselves and is not checked or warranted by The Marfan Foundation. The Foundation provides contact information for healthcare providers who are known to have seen patients with Marfan syndrome and related conditions. The Foundation does not endorse or recommend individual healthcare providers. You are responsible for interviewing and selecting the practitioner. By requesting healthcare 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.