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How we help

Through research, patient support, and education, we create a brighter future for everyone affected by Marfan syndrome and related conditions.

We tirelessly advance the research for treatments that save lives and dramatically enhance quality of life for affected people.

  • Through our research grant program, we’ve strengthened a growing community of expert researchers committed to victory over Marfan syndrome and related disorders.
  • We push the government to fund the research that will improve and save lives.
  • We facilitate the sharing of knowledge about Marfan syndrome and related conditions through conferences, symposia, and partnerships with governmental agencies and other health organizations.
  • We continue to move forward research for both Marfan syndrome and related conditions because advances in fighting Marfan syndrome helps us take steps toward victory in related conditions—and vice versa.

We provide a supportive community for everyone affected by Marfan syndrome and related conditions.

  • Individuals, family members, medical professionals, and other healthcare providers can access information about Marfan syndrome and related conditions on our website, over the phone, or via email.
  • Special resources are available for children, teens, parents, teachers, nurses, and other specialized groups.
  • Our active volunteer network organizes support for families who are dealing with Marfan syndrome and raises money and awareness in local communities nationwide.
  • Our annual conference brings together the entire community for information and resource sharing.

We always have the latest and most accurate information, and we educate everyone—from patients and families to medical professionals and the general public—about Marfan syndrome and related conditions.

  • Our mail and email outreach keeps people up-to-date with the latest in care, treatment, research, and opportunities to help.
  • Our website is a great resource for our entire community, and it’s often the first place newly diagnosed families come to find answers and support.