The Marfan Blog

Working with Your School Nurse

Aug 24, 2019 by The Marfan Foundation

newsschoolyear

For parents of a child with a connective tissue condition, worrying is a daily habit. The beginning of a new school year is especially stressful. Not only do you and your family have to get back into the routine, but you and your child have to “break in” a new teacher and sometimes a new school and a new school nurse. You want to ensure that your child will be safe at school and empowered to achieve academically – and that the school can handle any potential emergency medical situation.

Topics: Medical Management, Education, school

The Easiest Resolution: Taking Control of Your Health Journey in 2019

Jan 8, 2019 by The Marfan Foundation

The ball has dropped, and we rang in the New Year. Ready or not, 2019 is here.

Topics: Healthcare Management, Medical Management, Backpack Health

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

The Marfan Foundation and Backpack Health: Frequently Asked Questions

May 17, 2018 by The Marfan Foundation

The Marfan Foundation announced that, starting today, it is making a new app available for free to people with Marfan and related disorders – and their families – to securely manage their medical records.

Topics: Living Successfully, Quality of Life, Healthcare Management, Medical Management