The Marfan Blog

The Marfan Foundation

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

Recent Posts

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

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: Living Successfully, Quality of Life, Marfan Community

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

Sep 12, 2017 by The Marfan Foundation

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

7 Simple Fundraising Tips You Can Use Today

Nov 20, 2015 by The Marfan Foundation

“Where there is unity there is always victory.” –Publilius Syrus

Our nationwide Walk for Victory program is achieving just that…victory.

Roughly 200,000 people in the United States are living with Marfan syndrome or a related connective tissue disorder.  Since 1981, The Marfan Foundation has observed, and been a part of countless victories in the Marfan syndrome and related disorders community.

Topics: Volunteer, Marfan Community, Team Victory