GLOBAL FOUNDATION FOR PEROXISOMAL DISORDERS
Programs
Family Health Literacy Program
FAMILY SUPPORT PROGRAM: HEALTH LITERACY: THE GFPD IS FOCUSED ON BUILDING HEALTH AND SCIENTIFIC LITERACY FOR PATIENTS AND CAREGIVERS THROUGH A WIDE ARRAY OF COMMUNICATION MECHANISMS. THROUGH A POWERFUL WEBSITE THAT WAS REDESIGNED IN 2022 TO CREATE GREATER EASE OF USE AND ACCESS TO RESOURCES, THE GFPD REACHED HUNDREDS OF FAMILIES WORLDWIDE TO DISSEMINATE INFORMATION INCLUDING THE ONLY PEER-REVIEWED TREATMENT GUIDELINES FOR PEROXISOMAL PATIENTS. ADDITIONALLY, WE HAVE MORE THAN 4,000 FOLLOWERS WORLDWIDE ON SOCIAL MEDIA WHERE MORE THAN HALF OF THE POSTS AND MESSAGING ARE DESIGNED TO EMPOWER CAREGIVERS OF PATIENTS WITH HEALTH INFORMATION AND OTHER TOOLS FOR CLINICAL OUTCOMES. PATIENT SUPPORT:THE GFPD HOSTED A BIENNIAL CONFERENCE IN 2022 FOR 294 PARTICIPANTS COMPRISING FAMILIES, PATIENTS, RESEARCHERS, SCIENTISTS, PHYSICIANS, OTHER CLINICIANS, UNIVERSITY STUDENTS AND FELLOWS, INTERNS AND TRAINED TEAM MEMBERS TO ENGAGE IN FIVE DAYS OF LEARNING, SUPPORTS AND EXCHANGE FOR FAMILIES WITH PEROXISOMAL PATIENTS. THERE WERE MORE THAN 60 SESSIONS FOCUSED ON SCIENCE AND MEDICINE ADVANCEMENTS, CARE PROVISION, MENTAL HEALTH SUPPORTS, AND MORE. ADDITIONALLY, THE CONFERENCE WAS ABLE TO PROVIDE CARE FOR CHILDREN OF VARYING NEEDS THROUGH ITS WARRIOR CAMP MODEL THAT PAIRS UNIVERSITY INTERNS WITH FAMILIES AND CHILDREN. FINALLY, THE GFPD WAS ABLE TO PROVIDE ACCESS TO MORE THAN $100,000 WORTH OF PRO BONO CONSULTATIONS FROM PHYSICIANS, SCIENTISTS, ALLIED HEALTH PROFESSIONALS, ETC. TO FAMILIES FROM AROUND THE WORLD. OTHER ACTIVITIES:THE GFPD HOSTED A NUMBER OF VIRTUAL MEET-UPS, WEBINARS AND SUPPORT GROUPS FOR PARENTS AND CAREGIVERS TO INCREASE HEALTH LITERACY THAT RESULTS IN BETTER CLINICAL OUTCOMES FOR PATIENTS, LINKAGE TO CARE PROVIDERS ACROSS THE COUNTRY, AS WELL AS PROVIDE NECESSARY EMOTIONAL AND BEHAVIORAL SUPPORTS FOR CAREGIVERS AND ASSIST IN ADVOCACY AND POLICY CHANGE FOR RARE DISEASE PATIENTS.GeographiesNot indicatedDatesJan 1, 2022 – Dec 31, 2022Source990No causes providedNo populations provided–$643.3KPeroxisomal Research and Support
RESEARCH AND MEDICINE:THE GFPD HAS ESTABLISHED A STRONG COMMITTEE OF PHYSICIANS AND SCIENTISTS AS PART OF OUR MEDICAL AND SCIENTIFIC ADVISORS GROUP. THESE INDIVIDUALS COMPRISE RESEARCHERS, CLINICIANS AND EXPERTS FROM NORTH AMERICA AND EUROPE THAT TREAT AND ASSIST PEROXISOMAL PATIENTS THROUGH CLINICAL MEDICINE AND RESEARCH. THE GFPD HAS AWARDED A NUMBER OF GRANTS FOR FURTHER RESEARCH INCLUDING NATURAL HISTORY STUDY, MOUSE MODEL RESEARCH AND ACCESS TO GENETIC COUNSELING AND INFORMATION. PRIMARY RESEARCH PARTNERS INCLUDE MCGILL UNIVERSITY, BAYLOR COLLEGE OF MEDICINE, UNIVERSITY OF SOUTHERN CALIFORNIA, UNIVERSITY OF AMSTERDAM, THE KENNEDY KRIEGER INSTITUTE AND MONTCLAIR STATE UNIVERSITY. ADDITIONALLY, THE GFPD HAS CLINICAL ADVISORS FROM A NUMBER OF CHILDREN'S HOSPITALS THROUGHOUT NORTH AMERICA.GeographiesNot indicatedDatesJan 1, 2022 – Dec 31, 2022Source990No causes providedNo populations provided–$257.6K
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