The Marfan Blog

Peace Through Connection

Nov 19, 2018 by The Marfan Foundation

Connection is at the core of the Snyder family’s resilience. Through a combination of close family connections and connections to the right medical care at the right time, this family of four is successfully navigating Loeys-Dietz syndrome times 3.

Topics: Marfan Community, Quality of Life, Loeys Dietz, Research, Marfan Conference

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