The Marfan Foundation | The Marfan Foundation

The Marfan Foundation

The Marfan Foundation creates a brighter future for everyone affected by Marfan syndrome and related disorders.

  • We pursue the most innovative research and make sure that it receives proper funding.
  • We create an informed public and educated patient community to increase early diagnosis and ensure life-saving treatment.
  • We provide relentless support to families, caregivers, and healthcare providers.

We will not rest until we’ve achieved victory—a world in which everyone with Marfan syndrome or a related disorder receives a proper diagnosis, gets the necessary treatment, and lives a long and full life.

Our Values

In our mission to create a brighter future for everyone living with Marfan syndrome and related disorders, we hold a number of core beliefs and values that drive everything we do:

We put families at the heart of what we do.

Marfan syndrome and related disorders affect not only individuals but also the people who love them. We stand with and for the whole community.

We are vigilant in getting people diagnosed.

Too often Marfan syndrome and related disorders go undiagnosed. A diagnosis followed by proper treatment can save lives.

We constantly push innovation forward.

We are relentless in coming up with creative strategies to advance research, using state of the art tools to provide family support, and seeking the best ways to share the latest, most accurate information with our community.

We create a path if there isn’t a clear one.

A community that has, in the past, felt lost, frustrated, or confused needs a strong leader. We constantly drive progress forward—through research, education, and support for our community.

We build a welcoming and effective community.

Partnerships are the key to victory, and we initiate collaborations with those who help us get there. And because we can achieve more by working together, our community welcomes people affected both by Marfan syndrome and by other related disorders.

We have great hope, which is grounded in reality.

We are heartened by our advances in research, care, and awareness, and although we understand the many challenges before us, we see a bright future for everyone affected by Marfan syndrome and related disorders.

The Marfan Foundation also has high standards for governance. Our Conflict of Interest Policy and Whistleblower Policy reflect this commitment.