The Marfan Blog

The Marfan Foundation

The Marfan Foundation creates a brighter future for everyone living with Marfan syndrome and related disorders.

Recent Posts

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

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: Health Insurance, Family Planning, Diagnosis, Research

Newly Diagnosed? Veterans in the Marfan Community Offer Advice

Oct 31, 2017 by The Marfan Foundation

When you or a loved one receives a diagnosis of Marfan syndrome or a related disorder, you enter a whole new world. Everyone deals with the diagnosis differently.

Topics: Marfan Community, Living Successfully, Quality of Life

Sydney Lerman Pediatric Hospitality Program: Join Sydney and Carly in Giving Back

Sep 12, 2017 by The Marfan Foundation

Topics: Volunteer, Marfan Community, Living Successfully, Quality of Life