Platelet Disorder Support Association

2023 was an extremely busy year for pdsa as we celebrated the organization's 25th anniversary. It was our goal to organize with our volunteers 25 awareness events, including fundraisers and national walk/run "pump it up for platelets- and we reached that goal. Our 62 local Support groups held a total of 73 meetings and two facilitator workshops. Itp conference 2023 took place in chicago and was our 3rd largest conference in 23 years with 285 attendees, from 15 countries and 30 states. In addition, we offered a virtual conference platform with 1,098 pdsa members given access to the virtual content in september for itp awareness month. Pdsa hosted a webinar with the itp Support Association in the uk and two world- renowned itp experts in recognition of global itp awareness week. Pdsa also hosted the international itp alliance meeting as part of itp conference 2023. Fourteen global ambassadors representing 12 countries participated in the meeting. 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 patient quality of life were presented at ash, eha (european hematology/oncology Association) and nord. We funded four innovative patient-centered itp research studies in 2023. Pdsa was very active on the advocacy front, with staff and medical advisors meeting with directors from the division of blood disorders at both the nhlbi (national heart, lung and blood institute) and the cdc (centers for disease control and prevention). We organized two hill days in Washington, dc, meeting with 26 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. Due to our efforts, the department of health and human services included itp report language in senate appropriations bill - a first this means that congress has recognized the importance of greater awareness for itp. 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, college scholarship program, updating and translating numerous educational booklets, and producing a 28-page quarterly newsletter and monthly e- newsletter.