PLATELET DISORDER SUPPORT ASSOCIATION

NOW IN OUR 27TH YEAR, PDSA CONTINUES TO GROW AND EXPAND OUR REACH TO SUPPORT AND EDUCATE TENS OF THOUSANDS OF ITP PATIENTS AND FAMILIES AROUND THE WORLD. PDSA'S PATIENT AND CAREGIVER SUPPORT GROUPS EXPANDED TO 68 LOCATIONS IN THE U.S., AND CANADA; 80 MEETINGS TOOK PLACE IN VIRTUAL OR IN-PERSON FORMAT, WITH OVER 1,200 PATIENTS/CAREGIVERS PARTICIPATING. ITP CONFERENCE 2025, PDSA'S 25TH ANNUAL CONFERENCE, TOOK PLACE FOR THE FIRST TIME IN PHILADELPHIA, PA WITH MORE THAN 300 ATTENDEES REPRESENTING 15 COUNTRIES, 35 US STATES AND TWO CANADIAN PROVINCES. IN ADDITION, WE OFFERED A VIRTUAL CONFERENCE PLATFORM WITH MORE THAN 1,400 PDSA MEMBERS GIVEN ACCESS TO THE VIRTUAL CONTENT IN SEPTEMBER FOR ITP AWARENESS MONTH. PDSA ALSO HOSTED THE INTERNATIONAL ITP ALLIANCE MEETING WITH THIRTEEN GLOBAL AMBASSADORS REPRESENTING 12 COUNTRIES PARTICIPATED IN THE MEETING. PDSA STAFF AND OUR MEDICAL ADVISORS CONTINUED TO ANSWER PATIENT/CAREGIVER CALLS AND EMAILS VIA OUR ITP HELPLINE. THIS WAS ALL IN ADDITION TO PDSA'S REGULAR PROGRAMS AND RESOURCES, INCLUDING THE ITP POKE-R-CLUB FOR KIDS ENROLLING OUR 200TH CHILD, COLLEGE SCHOLARSHIP PROGRAM, PRODUCING A 28-PAGE QUARTERLY NEWSLETTER AND MONTHLY E-NEWSLETTER, AND UPDATING AND TRANSLATING NUMEROUS EDUCATIONAL BOOKLETS. TO DATE, OUR INTERNATIONAL COLLECTION TOTALS 44 TRANSLATED BOOKLETS IN 17 DIFFERENT LANGUAGES. ON THE RESEARCH FRONT, PDSA STAFF ATTENDED, EXHIBITED AND PRESENTED EDUCATIONAL PROGRAMS AT A NUMBER OF SCIENTIFIC/MEDICAL MEETINGS INCLUDING AMERICAN SOCIETY OF PEDIATRIC HEMATOLOGY /ONCOLOGY (ASPHO), NATIONAL ORGANIZATION OF RARE DISORDERS (NORD) RARE DISEASE SUMMIT AND THE NORD LIVING RARE, LIVING STRONGER PATIENT/FAMILY FORUM, AND THE AMERICAN SOCIETY OF HEMATOLOGY/ONCOLOGY ANNUAL MEETING AND EXHIBITION (ASH). PDSA ALSO ORGANIZED AND HOSTED THE ASH ITP BREAKFAST AND ICON (ITP CONSORTIUM OF NORTH AMERICA) ANNUAL MEETING WITH 250 ATTENDEES. OUR ABSTRACTS ON SHARED DECISION-MAKING WAS PRESENTED AT ASH AND NORD. WE FUNDED THREE INNOVATIVE PATIENT-CENTERED ITP RESEARCH STUDIES IN 2025. IN PARTNERSHIP WITH THE NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD), PDSA ADMINISTERS THE ONE AND ONLY ITP NATURAL HISTORY STUDY PATIENT REGISTRY, AN IMPORTANT GLOBAL COLLECTION OF PATIENT DATA THAT AIMS TO INFORM ITP RESEARCH AND TREATMENT DEVELOPMENT. 2,500+ PATIENTS ARE ENROLLED IN THE REGISTRY TO DATE. PDSA WAS VERY ACTIVE ON THE ADVOCACY FRONT, WITH ITP PATIENTS, CAREGIVERS, BOARD MEMBERS, STAFF AND MEDICAL ADVISORS MEETING WITH OUR CONGRESSIONAL LEADERS. WE ORGANIZED OUR LARGEST HILL DAY IN WASHINGTON, DC, WITH 30 PATIENTS, CAREGIVERS AND MEDICAL ADVISORS MEETING WITH 34 CONGRESSIONAL OFFICES TO EDUCATE THEM ON THE UNMET NEEDS AND BURDEN OF DISEASE OF ITP PATIENTS AND URGING THEM TO SUPPORT FEDERAL PROGRAMS FOR ITP.