Know the Signs, Fight for Victory

Helping You Reach Your
Research Goals

Your research is critical to creating a brighter future for people with Marfan syndrome and related conditions. We are here as a resource for you, whether you are a basic or clinical scientist conducting research to reduce or eliminate life-threatening and quality of life challenges facing patients with Marfan syndrome and related conditions.

  • We offer two-year grants for scientists at different stages of their career. This seed funding is essential for many scientists to obtain preliminary data required to compete for more competitive grants at the National Institutes of Health or other organizations.
  • We can announce study participation opportunities to our Marfan syndrome and related conditions community to help scientists reach their enrollment goals.
  • We can help connect you to other scientists to obtain resources – such as biological samples and mouse models – that you might need for your research.
  • We advocate with members of Congress on behalf of the research community for adequate funding of the National Institutes of Health and other government institutions where researchers usually apply for funding. We also advocate at the National Institutes of Health for grant mechanisms that will benefit the Marfan and related conditions population.
  • We act as a convener, organizer and supporter of state-of-the-art research meetings, such as the International Symposia on Marfan Syndrome and Related Conditions, to facilitate and maintain international collaboration among scientists in the field.

To discuss your research or obtain more information, please email

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Research Grant Program

Our research grant program is designed to provide financial support for investigators studying any or all disciplines involved in Marfan syndrome, Vascular Ehlers-Danlos syndrome, Ehlers-Danlos syndrome, Loeys-Dietz syndrome, and other aortic and vascular conditions.

Scientific Meetings

To facilitate and maintain international collaboration among scientists in the field, we convene and sponsor symposia on Marfan syndrome and related conditions.

These symposia provide a common meeting ground for basic scientists, applied scientists, and clinicians to better understand:

  • The molecular etiology of Marfan syndrome and related conditions
  • The biochemical abnormalities produced by the underlying mutations in genes
  • The clinical consequences of these mutations
  • Medical and surgical management and the effects of these interventions on natural history

These meetings are held at several-year intervals to allow time for sufficient progress and the assessment of new advances and their impact. Scientific advances presented at these meetings included discovery of the gene that causes Marfan syndrome. Important meeting outcomes included the development of research agendas and directives for revising diagnostic criteria.

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Science in Paris 2022

Our Science in Paris meeting will take place April 25-28, 2022.  The goal of the meeting is to bring together national and international researchers and clinicians focused on genetic aortic and vascular conditions, enhancing collaboration and discovery to ultimately benefit patients and families.

This four-day event will feature three separate, but connected, scientific meetings on Vascular Ehlers-Danlos syndrome (Day 1), Marfan, Loeys-Dietz, and related syndromes (Days 2 and 3), and the GenTAC Aortic Summit (Day 4).  Clinicians in all disciplines, surgeons, and researchers are welcome to attend.