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 Conference, Marfan Community, Research, Quality of Life, Loeys Dietz
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: Marfan Community, Research, Tips, Healthcare Management, Medical Management
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: Health Insurance, Family Planning, Diagnosis, Research