The Marfan Blog

Jim Cavan: The Journey to Backpack Health

Sep 24, 2018 by Jim Cavan

Maggie, with her mom, Jennifer, at the Foundation's Boston Walk for Victory in June.


As anyone with a rare disease will tell you, the health journey is extremely nuanced and complex.  It’s difficult enough having to deal with the symptoms themselves, but managing one’s care makes it that much more challenging.

Topics: Healthcare Management, Medical Management, Tips, Research, Marfan Community

CRISPR and Marfan Syndrome

Mar 28, 2018 by The Marfan Foundation

Have you heard of CRISPR gene editing technology and wondered if it could one day be used to treat or even cure Marfan syndrome? Many members of our community have asked about CRISPR so we wanted to provide an overview of this type of research and what its potential might be for treating Marfan and related disorders.

Topics: Research

To Know or Not to Know: Genetic Testing and Marfan Syndrome

Nov 28, 2017 by The Marfan Foundation

Topics: Family Planning, Research, Health Insurance, Diagnosis

Physical Therapy: Myths and Facts

Sep 29, 2017 by Michael P. Healy

Topics: Quality of Life, Marfan Community, How the Body is Affected, Research

Meet Your Gene:  An Introduction to the Marfan Gene and Current Research

Jan 10, 2017 by Roanne Weisman

Topics: Research, Diagnosis, Quality of Life, Marfan Community, Living Successfully