MarfanLife.net | Marfan-List

Marfan-List began in May, 1997. As of August 26, there are 510 subscribers from around the world. Messages currently average between 2-20 per day.

TO SUBSCRIBE: Send an email (can be blank — no human reads it, just the computer — to marfan-list-subscribe at marfan-list dot org. Make sure you include the hyphens.

TO UNSUBSCRIBE: Send an email to marfan-list-unsubscribe at marfan-list dot org. Make sure you include the hyphens.

LOGIN to read messages and change user settings: Marfan-List user interface

Marfan-List is an unmoderated email discussion mailing list for anyone interested in the Marfan syndrome or related disorders. Subscribers may include patients with these connective-tissue disorders, family and friends of patients, researchers and health-care workers interested in the Marfan syndrome and related disorders, and anyone else wishing to know more about it. Any topic related to the Marfan syndrome and related disorders is appropriate for discussion.

NOTE: Most participants of this list are not medical professionals, and unless they so indicate in their comments, do not have any particular medical or professional training or expertise in the diagnosis, care and treatment of the Marfan syndrome.

List participants are generally persons affected with the Marfan syndrome and their friends and family members. The information they share is primarily anecdotal and is based upon their own personal experience.

Any person who suspects that he or she or a family member may have the Marfan syndrome, or that has specific questions about any aspects of the condition, should contact a medical professional or should contact the National Marfan Foundation, a voluntary health organization that provides information to affected persons and their families.

Marfan-List is neither sponsored, moderated, nor facilitated by the National Marfan Foundation.