The Marfan Foundation Inc

Programs: Research - the marfan foundation tirelessly advances the research for treatments that save lives and dramatically enhance quality of life for people living with marfan syndrome and related disorders. Through its research grant program, the foundation has strengthened a growing community of expert researchers committed to victory over marfan syndrome and related disorders. The foundation urges the government to fund the research that will improve and save lives and facilitates the sharing of knowledge about marfan syndrome and related disorders through conferences, symposia, and partnerships with governmental agencies and other health organizations.

support - the marfan foundation provides a supportive community for everyone affected by marfan syndrome and related disorders. Individuals, family members, medical professionals, and other healthcare providers can access information about marfan syndrome and related disorders on its website, over the phone, or via email, and it offers special resources for children, teens, parents, teachers, nurses, and other specialized groups. Its annual family conference brings together the entire community for information and resource sharing while its active volunteer network organizes support for families who are dealing with marfan syndrome and raises money and awareness in local communities nationwide.

education - the marfan foundation always has the latest and most accurate information, and it educates everyone: from patients and families to medical professionals and the general public about marfan syndrome and related disorders. The foundation provides expansive information for patients, family members, and healthcare providers through its website and helpline, accessible via phone and email, and creates public awareness campaigns about the risk of sudden death for people with marfan syndrome and the importance of early diagnosis, generating high-profile media coverage that helps people get the diagnosis and treatment they need to live with marfan syndrome.