THE MARFAN FOUNDATION INC
Programs
Marfan Research Initiatives
RESEARCH - SEE SCHEDULE O.RESEARCH - EXPENSES $2,411,213, GRANTS $1,068,916, REVENUE $112,865THE MARFAN FOUNDATION ADVANCES RESEARCH THAT SAVES LIVES AND DRAMATICALLY ENHANCES THE QUALITY OF LIFE FOR PEOPLE LIVING WITH MARFAN SYNDROME, LOEYS-DIETZ SYNDROME, VEDS, AND GENETIC AORTIC AND VASCULAR CONDITIONS. OUR RESEARCH PROGRAM HAS ADVANCED SCIENCE FOR 41 YEARS, FUNDING 170 RESEARCH GRANTS SINCE 1986. THE RESEARCH WE'VE SUPPORTED HAS HELPED REDUCE LIFE-THREATENING PROBLEMS, IDENTIFIED TREATMENTS THAT HAVE IMPROVED THE QUALITY OF LIFE, AND HELPED PEOPLE LIVE LONGER LIVES WITH MARFAN SYNDROME AND RELATED CONDITIONS. THE MARFAN FOUNDATION COLLABORATES WITH THE RESEARCH COMMUNITY AND ORGANIZATIONS TO IDENTIFY NEW THERAPIES AND TREATMENTS DOMESTICALLY AND AROUND THE GLOBE. THE FOUNDATION'S TWO-YEAR AND FOUR-YEAR GRANTS MECHANISMS HELP ENSURE A PIPELINE OF DEDICATED FELLOWS, NEW INVESTIGATORS, AND FACULTY MEMBERS WHO ARE COMMITTED TO THE SCIENTIFIC DISCOVERY NECESSARY TO ADVANCE UNDERSTANDING OF RARE DISEASES. THE FOUNDATION CONVENES NATIONAL AND INTERNATIONAL RESEARCH CONFERENCES, FACILITATES COLLABORATIONS AMONG RESEARCHERS AND RESEARCH INSTITUTIONS, AND HOLDS SYMPOSIA IN THE US AND ABROAD TO FACILITATE THE SHARING OF RESEARCH FINDINGS THAT EXPEDITE PROGRESS. THE MARFAN FOUNDATION PARTNERS WITH GOVERNMENT AGENCIES AND OTHER HEALTHCARE ORGANIZATIONS TO ADVANCE ITS RESEARCH GOALS AND ADVOCATE FOR ADDITIONAL RESEARCH FUNDING FROM THE GOVERNMENT.GeographiesNot indicatedDatesJul 1, 2022 – Jun 30, 2023Source990No causes providedNo populations provided–$2.4MSupport and Information Services
SUPPORT - SEE SCHEDULE O.SUPPORT - EXPENSES $1,885,822, GRANTS $40,377, REVENUE $102,001THE MARFAN FOUNDATION ALWAYS HAS THE LATEST AND MOST ACCURATE INFORMATION ABOUT MARFAN SYNDROME, LOEYS-DIETZ, VASCULAR EHLERS-DANLOS (VEDS), AND OTHER GENETIC AORTIC AND VASCULAR CONDITIONS, AND IT REACHES A WORLDWIDE AUDIENCE DIGITALLY AND THROUGH IN-PERSON PROGRAMMING. THE MARFAN FOUNDATION CONNECTS THOUSANDS OF INDIVIDUALS AND FAMILIES TO THE 70 NATIONWIDE INSTITUTIONS OFFERING EXPERIENCE AND EXPERTISE IN MARFAN, LDS, VEDS, AND GENETIC AORTIC AND VASCULAR CONDITIONS. WE PROVIDE EXPANSIVE INFORMATION FOR PATIENTS, FAMILY MEMBERS, AND HEALTHCARE PROVIDERS THROUGH OUR WEBSITE AND HELPLINE, ACCESSIBLE VIA PHONE AND EMAIL, AS WELL AS WEBINARS ON MEDICAL TOPICS, MENTAL HEALTH ISSUES, SUPPORT GROUPS, AND QUALITY OF LIFE. PROGRAMS ARE SCHEDULED AT VARIOUS TIMES TO INCREASE ACCESS ACROSS TIME ZONES (US AND ABROAD). AN INCREASING NUMBER OF RESOURCES AND EDUCATIONAL OPPORTUNITIES ARE OFFERED IN SPANISH AND OTHER LANGUAGES TO BETTER SERVE AFFECTED PATIENTS AND FAMILIES. THE FOUNDATION IS FOCUSED ON REACHING MORE PEOPLE IN TRADITIONALLY UNDERSERVED COMMUNITIES, INCREASING HEALTH EQUITY, AND FOSTERING ADDITIONAL ACCESS TO CARE.GeographiesNot indicatedDatesJul 1, 2022 – Jun 30, 2023Source990No causes providedNo populations provided–$1.9MMarfan Foundation Educational Programs
EDUCATION - SEE SCHEDULE O.EDUCATION - EXPENSES $1,193,283, GRANTS $6,634, REVENUE $10,340THE MARFAN FOUNDATION AND ITS DIVISIONS (LOEYS-DIETZ, VEDS, AND GENTAC) ARE THE PREEMINENT PROVIDERS OF INFORMATION AND PROGRAMS FOR AFFECTED INDIVIDUALS AND FAMILIES WITH GENETIC AORTIC AND VASCULAR CONDITIONS, MEDICAL PROFESSIONALS, RESEARCHERS, AND THE GENERAL PUBLIC. WE REACH ONE MILLION PEOPLE ANNUALLY WITH OUR EDUCATIONAL RESOURCES. WE CONNECT THOUSANDS OF INDIVIDUALS AND FAMILIES TO THE 70 INSTITUTIONS NATIONWIDE THAT OFFER EXPERIENCE AND EXPERTISE IN MARFAN, LDS, VEDS, AND GENETIC AORTIC AND VASCULAR CONDITIONS.THE MARFAN FOUNDATION OFFERS A WEALTH OF MEDICAL AND QUALITY-OF-LIFE INFORMATION FOR PEOPLE LIVING WITH MARFAN SYNDROME, LOEYS-DIETZ, VASCULAR EHLERS-DANLOS (VEDS), AND RELATED CONDITIONS IN MANY LANGUAGES THROUGH ITS HELP & RESOURCE CENTER, WHICH REACHES OVER 5,000 PEOPLE EVERY YEAR -- DIRECTED BY AN IN-HOUSE NURSE AND BILINGUAL MANAGER WHO ANSWER QUESTIONS BY PHONE AND EMAIL, AND THROUGH ITS COMPREHENSIVE WEBSITE, WHICH IS AVAILABLE IN 25 LANGUAGES. EXTENSIVE INFORMATION IS AVAILABLE FOR INDIVIDUALS, FAMILIES, AND MEDICAL PROFESSIONALS, WITH SPECIALIZED RESOURCES FOR CHILDREN, TEENS, PARENTS, TEACHERS, AND SCHOOL NURSES. IN ADDITION, THE FOUNDATION IS FOCUSED ON MENTAL HEALTH, OFFERING A RANGE OF OPPORTUNITIES, INCLUDING VIRTUAL SUPPORT GROUPS, VIDEOS, WEBINARS, AND OTHER CONTENT. THE MARFAN FOUNDATION FOCUSES ON EXPANDING HEALTH EQUITY AND ACCESS TO CARE FOR THE CONSTITUENTS WE SERVE DOMESTICALLY AND WORLDWIDE.GeographiesNot indicatedDatesJul 1, 2022 – Jun 30, 2023Source990No causes providedNo populations provided–$1.2M
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