NATIONAL BLEEDING DISORDERS FOUNDATION
Programs
Health Education and Support Programs
HEALTH EDUCATION AND TRAININGNBDF WRAPPED UP A PILOT HEALTH COACHING PROJECT "OWN YOUR PATH", FOR YOUNG ADULT MEN WITH HEMOPHILIA TO HELP IMPROVE TREATMENT ADHERENCE IN 2023 AND IS MAKING IMPROVEMENTS TO OPEN IT UP TO WOMEN AND THOSE WITH VWD SOON. NBDF ALSO CONTINUES TO DISTRIBUTE ALL OF ITS EDUCATIONAL PUBLICATIONS FOR THOSE LIVING WITH INHERITABLE BLEEDING DISORDERS, FROM MASAC FOR YOU, STARTING WITH ENSURING THAT MASAC GUIDELINES ARE EXPLAINED IN SIMPLE PLAIN LANGUAGE ACCESSIBLE TO ALL TO USE IN SELF-ADVOCACY, TO WORKING FOR YOU, A NEW PUBLICATION ON JOB CHOICE CONSIDERATIONS FOR THOSE WITH BLEEDING DISORDERS. IN 2023, NBDF DISTRIBUTED 12,814 PUBLICATIONS.THE PRIMARY GOALS OF THE NATIONAL HEMOPHILIA FOUNDATION'S (NHF'S) VICTORY FOR WOMEN AND BETTER YOU KNOW PROGRAMS ARE: 1) IMPROVE THE AWARENESS OF SYMPTOMS OF BLEEDING DISORDERS IN WOMEN TO INCREASE DIAGNOSIS LONG TERM; AND 2) TO PROVIDE AFFECTED WOMEN WITH EDUCATION AND SUPPORT. IN 2023 NBDF CLOSED OUT ITS PILOT PROGRAM JOURNEY TO KNOW, WHERE WOMEN WITH SYMPTOMS JOIN A 3-MONTH INTERVENTION TO GET MORE INFORMATION AND SUPPORT ON THE PATH TO DIAGNOSIS. THE 22 PARTICIPANTS SHARED THAT THEY LEARNED ABOUT HOW TO SPEAK WITH THEIR DOCTORS AND MORE ABOUT SYMPTOMS OF BLEEDING DISORDERS. IN 2033, OVER 5200 WOMEN TOOK THE BETTER YOU KNOW RISK ASSESSMENT TOOL, 74% HAD SYMPTOMS OF A BLEEDING DISORDER, AND OVER 6,400 VISITED VICTORYFORWOMEN.ORG.STEPS FOR LIVING IS A MULTIMEDIA EDUCATIONAL PROGRAM DESIGNED TO INCREASE ACCESS TO AGE AND CULTURALLY APPROPRIATE INFORMATION THAT CAN HELP IN THE MANAGEMENT OF DAILY CHALLENGES OF LIVING WITH A BLEEDING DISORDER. NBDF CONTINUES TO WORK ON THE REDESIGN AND RELAUNCH FOR 2024. IN 2023, STEPSFORLIVING.HEMOPHILIA.ORG HAD OVER 99,000 VIEWS. NBDF'S EDUCATION FOR EMPOWERMENT PROGRAM BRINGS WORKSHOPS OUT TO LOCAL CHAPTER AND HTC EVENTS. NBDF FACILITATED 57 WORKSHOPS IN ENGLISH AND SPANISH, WITH OVER 900 PARTICIPANTS IN 2023. HOT TOPICS 2023 WERE REPRODUCTIVE HEALTH, MENSTRUATION, AND MENOPAUSE, FINDING THE STRENGTH THROUGH THE STRUGGLE, AND WHO IS TAKING CARE OF THE CAREGIVER?NBDF HAS DESIGNED THE NATIONAL YOUTH LEADERSHIP INSTITUTE (NYLI) TO ASSIST YOUNG PEOPLE FROM THE BLEEDING DISORDERS COMMUNITY TO BECOME WELL-TRAINED, RECOGNIZED LEADERS. NBDF PROVIDES YOUNG ADULTS WITH TRAINING, SUPPORT AND OPPORTUNITIES TO PROVIDE EDUCATION TO THE BLEEDING DISORDERS COMMUNITY. IN 2023, NBDF PROVIDED TRAININGS TO THE 7 MEMBERS OF NYLI ON TOPICS INCLUDING PUBLIC SPEAKING, ADVOCACY, NON-PROFIT MANAGEMENT AND FUNDRAISING. NBDF DEVELOPED NUMEROUS EDUCATIONAL COMPONENTS TO ITS FUTURE THERAPIES PROGRAMMING TO ENSURE THAT COMMUNITY MEMBERS ARE AWARE OF THE LATEST TREATMENTS IN THE PIPELINE AND HOW TO HAVE CONVERSATIONS WITH THEIR HEALTHCARE PROVIDERS FOR THE BEST TREATMENT DECISIONS. NBDF PARTNERED ON A SHARED-DECISION MAKING TOOL WITH THE WORLD FEDERATION OF HEMOPHILIA AND LAUNCHED A 3D VIDEO SERIES ON THE CLOTTING CASCADE WITH OVER 30,000 VIEWS IN ONLY A FEW MONTHS SINCE IT LAUNCHED.AT NBDF'S 75TH BLEEDING DISORDERS CONFERENCE, THE NBDF OFFERED 49 HOURS OF LIVE TRAINING FOR HEALTH CARE PROVIDERS OVER 4 TRACKS. CONTINUING EDUCATION CREDIT WERE OFFERED OVER 8 DISCIPLINES: - PHYSICIANS - MD, DO AND PHYSICIAN ASSISTANTS (A MAXIMUM OF 9.0 AMA PRA CATEGORY 1 CREDITS) - PHARMACISTS (FOR 9.0 ACPE CONTACT HOURS) - NURSES / NURSE PRACTITIONERS (UP TO 12.25 ANCC CONTACT HOURS, WITH AN ADDITIONAL 3.0 CONTACT HOURS RELATED TO PHARMACOTHERAPEUTIC CONTENT) - SOCIAL WORKERS (UP TO 12.25 ASWB-APPROVED CONTINUING EDUCATION CREDITS) - PHYSICAL THERAPISTS (UP TO 12.5 CEUS, STATE DEPENDENT)WE OFFERED ALL SESSIONS IN PERSON AND HAD 404 HEALTH CARE PROVIDERS IN PERSON.HANDI, NBDF'S INFORMATION RESOURCE CENTER, PROVIDED CUSTOMIZED RESPONSES TO OVER 800+ PHONE/E-MAIL REQUESTS ABOUT BLEEDING OR OTHER RARE DISORDERS. "HANDI FREQUENTLY ASKED QUESTIONS" PROVIDES TARGETED ANSWERS TO PARENTS/CAREGIVERS, INDIVIDUALS LIVING WITH AN INHERITABLE BLEEDING DISORDER AND HEALTHCARE PROVIDERS AND ARE AVAILABLE ON THE NBDF WEB SITE. WE AWARDED THE 2023 KEVIN CHILD SCHOLARSHIP TO HUNTER MONTGOMERY OF COTTENWOOD HEIGHTS, UT. HANDI ALSO WROTE OVER 50 MEDICAL RELATED NEWS STORIES THAT WERE POSTED ON THE NBDF WEB SITE. NBDF'S MEDICAL AND SCIENTIFIC ADVISORY COUNCIL (MASAC) ISSUED SIX (NEW/UPDATED) DOCUMENTS IN 2023: - MASAC DOCUMENT 282 - MASAC RECOMMENDATIONS ON HEMOPHILIA TREATMENT CENTER PREPAREDNESS FOR DELIVERING GENE THERAPY FOR HEMOPHILIA - MASAC DOCUMENT 281 - MASAC RECOMMENDATIONS ON SCREENING FOR DEVELOPMENT OF HEPATOCELLULAR CANCER IN PERSONS WITH HEPATITIS B AND C - MASAC DOCUMENT 280 - MASAC RECOMMENDATIONS CONCERNING PRODUCTS LICENSED FOR THE TREATMENT OF HEMOPHILIA AND SELECTED DISORDERS OF THE COAGULATION SYSTEM - MASAC DOCUMENT 279 - RECOMMENDATIONS ON REDUCING BARRIERS TO SUBSTANCE USE DISORDER (SUD) TREATMENT FACILITIES AND PROGRAMS FOR PERSONS WITH BLEEDING DISORDERS (PWBD) - MASAC DOCUMENT 278 - MASAC RECOMMENDATIONS ON ADMINISTRATION OF VACCINES TO INDIVIDUALS WITH BLEEDING DISORDERS - MASAC DOCUMENT 275 - MASAC RECOMMENDATIONS REGARDING PHYSICAL THERAPY MANAGEMENT FOR THE CARE OF PERSONS WITH BLEEDING DISORDERSONE NEW NHF-TAKEDA CLINICAL FELLOW WAS SELECTED TO RECEIVE MENTORED-TRAINING IN 2023-2025: - DEBBIE (CHEN-FEI) JIANG, MD (BOSTON CHILDREN'S HOSPITAL/BOSTON HEMOPHILIA CENTER HARVARD UNIVERSITY)GeographiesNot indicatedDatesJan 1, 2023 – Dec 31, 2023Source990No causes providedNo populations provided–$6MState Based Advocacy Coalition Program
COMMUNITY SERVICESNBDF'S PUBLIC POLICY DEPARTMENT WORKS TO ADVOCATE FOR POLICIES THAT PROMOTE THE HEALTH, SAFETY, RIGHTS AND ACCESS TO CARE FOR PEOPLE WITH INHERITABLE BLOOD DISORDERS BY EDUCATING FEDERAL AND STATE LAWMAKERS, OTHER GOVERNMENT AGENCIES AND OFFICIALS, AS WELL AS INDUSTRY AND ALLIED HEALTH EDUCATION AND TRAINING ORGANIZATIONS. TWO KEY AREAS OF FOCUS ARE PAYER AND CONSUMER EDUCATION, AND SELF-ADVOCACY.THE PUBLIC POLICY DEPARTMENT PROVIDES TRAINING, TOOLS, AND HANDS-ON SUPPORT TO CONSUMERS TO HELP THEM BECOME EFFECTIVE SELF-ADVOCATES.THROUGH THE STATE-BASED ADVOCACY PROGRAM, NBDF AWARDS GRANTS TO CHAPTERS, COMPETITIVELY, TO SUPPORT THEIR ADVOCACY EFFORTS. SUCCESSFUL GRANT RECIPIENTS ARE REQUIRED TO ATTEND SEVERAL VIRTUAL OR IN-PERSON TRAINING EVENTS ANNUALLY, HOLD REGULAR ADVOCACY COMMITTEE MEETINGS, INCLUDE NBDF STAFF IN STATE ADVOCACY EVENTS, PROVIDE A MIDYEAR PROGRESS REPORT, COLLECT, SUBMIT SPECIFIED PROGRAM METRICS QUARTERLY, HOST A STAKEHOLDER PLANNING MEETING AND SUBMIT A FINAL REPORT AT YEAR'S END. THIS PROGRAM IS HOUSED IN THE STATE GOVERNMENT RELATIONS DEPARTMENT AND IS NAMED THE STATE BASED ADVOCACY COALITION (SBAC) PROGRAM. GRANTS ARE ISSUED ON AN ANNUAL BASIS, WITH CHAPTERS APPLYING EACH DECEMBER. ALL CHAPTERS ARE ELIGIBLE TO APPLY FOR FINANCIAL AND PROGRAMMATIC SUPPORT.MEMBERS OF THE INHERITABLE BLOOD DISORDERS COMMUNITY THROUGHOUT THE COUNTRY ARE ENCOURAGED TO PARTICIPATE IN NBDF'S ANNUAL WASHINGTON DAYS PROGRAM, WHICH IS A GRASSROOTS ADVOCACY EVENT THAT BRINGS PATIENTS AND THEIR FAMILIES TO WASHINGTON, DC TO MEET WITH THEIR MEMBERS OF CONGRESS AND EDUCATE THEM ABOUT THE DISORDERS IMPACTING THE COMMUNITY. THIS EVENT TOOK PLACE IN EARLY MARCH. CONSUMERS ARE ALSO ENCOURAGED TO ATTEND STATE ADVOCACY DAYS AT THEIR LOCAL STATE CAPITAL. NBDF ALSO PROVIDES EDUCATIONAL OPPORTUNITIES FOR PAYERS TO HELP THEM BETTER UNDERSTAND THE UNIQUE HEALTHCARE NEEDS OF THOSE AFFECTED BY BLOOD DISORDERS, INCLUDING LIVE PRESENTATIONS, WEBINARS, ONLINE EDUCATIONAL MODULES, AND A JOINT COLLABORATIVE BRINGING TOGETHER PAYERS, MEDICAL PROVIDERS AND PATIENTS. NBDF HOSTS ABOUT 25-30 STATE ADVOCACY DAYS PER YEAR.GeographiesNot indicatedDatesJan 1, 2023 – Dec 31, 2023Source990No causes providedNo populations provided–$5.5MGene Therapy Research Initiatives
RESEARCHGENE THERAPY NOVEL TECHNOLOGY WORKSHOP (GTNT WORKSHOP) WAS HELD ON MARCH 23-25, 2023, IN WASHINGTON DC. THIS INTERNATIONAL WORKSHOP WAS ATTENDED BY 90 RESEARCHERS, CLINICIANS, REPRESENTATIVES OF GOVERNMENT AGENCIES, PATIENT ADVOCACY AND INDUSTRY ORGANIZATIONS. 57 RESEARCHERS PRESENTED THEIR WORK AND REVIEWED THE CURRENT SCIENCE RELATED TO ADENO-ASSOCIATED VIRUS (AAV) GENE THERAPY AND RELEVANT SAFETY, EFFICACY, IMMUNOTOXICITY AND GENOTOXICITY. LIVED EXPERIENCE EXPERTS (LEE), OR PEOPLE AFFECTED BY BLEEDING DISORDERS) PROVIDED THEIR PERSPECTIVES. PARTICIPANTS DISCUSSED CURRENT STATE-OF-THE-ART SCIENCE AND CHALLENGES RELATED TO IMMUNOLOGIC RESPONSES, GENOTOXICITY, GENETICS, AND LABORATORY ASSAYS RELEVANT TO AAV-BASED GENE THERAPY; AND IDENTIFIED FUTURE STRATEGIES AND DEVELOPMENT OPPORTUNITIES TO OVERCOME THESE BARRIERS TO SAFE AND EFFECTIVE GENE THERAPY. POST EVENT SURVEY RESPONSES INDICATED THAT 100% OF ATTENDEES IDENTIFIED BEING EITHER "VERY SATISFIED OR "SATISFIED" ON A 5-POINT LIKERT-SCALE. SPEAKERS WERE RATED AS "EXCELLENT" (N=34, 75.56%) OR "VERY GOOD" (N=11, 24.44%) ON A SIMILAR SCALE. THE RESPONSE RATE WAS 66%NATIONAL RESEARCH BLUEPRINT (NRB): IN 2019, NBDF LAUNCHED A COMMUNITYWIDE PROJECT TO REDEFINE THE WAY RESEARCH IN THE BLEEDING DISORDERS COMMUNITY IS CONDUCTED. THE GOAL OF THE NRB IS TO (1) DEVELOP A MULTIDISCIPLINARY INTEGRATED RESEARCH ENTERPRISE CENTERED IN A NETWORK OF BOTH SPECIALTY AND COMMUNITY-BASED CARE; DRIVEN BY PWIBDS AS LIVED EXPERIENCE EXPERTS (LEES); EMBEDDED IN THE PRINCIPLES OF SOCIAL JUSTICE; AND THAT STEADILY ADVANCES THE STANDARD OF CARE FOR PWIBDS THROUGH IMPACTFUL BASIC, TRANSLATIONAL, CLINICAL, HEALTH OUTCOMES, AND IMPLEMENTATION RESEARCH, ADVOCACY AND EDUCATION; (2) EXPAND THE NATIONAL RESEARCH INFRASTRUCTURE TO SUPPORT THE ENVISIONED RESEARCH ENTERPRISE THROUGH FACILITATION COLLABORATION AND INCLUSION, AND (3) REINVIGORATE A SUSTAINABLE WORKFORCE ACROSS COMPREHENSIVE CARE AND SCIENTIFIC DISCIPLINES THAT INCORPORATES THE LEE PERSPECTIVE TO ADVANCE HEALTH THROUGH THE SEAMLESS INTEGRATION OF CARE AND RESEARCH AS WELL AS ACTIVE COMMUNITY ENGAGEMENT TO FOSTER A RESEARCH CULTURE. ALTHOUGH PHASE II OF THE NRB BEGAN IN 2022, THE NEWLY FORMED WORKING GROUPS (WG) DID THE BULK OF THEIR WORK AIMED AT DEFINING AND REFINING THE RECOMMENDATIONS TO DEVELOP A NATIONAL RESEARCH BLUEPRINT IN 2023 THE WG RECOMMENDATIONS WOULD BE PRESENTED AT THE NRB SUMMIT IN 2024. NBDF 'S RESEARCH DEPARTMENT WAS ALSO INSTRUMENTAL IN INFORMING AND SEEKING INPUT FROM THE LARGER COMMUNITY BY PRESENTING IN THE ANNUAL BLEEDING DISORDERS CONFERENCE AND THE WEDNESDAY WEBINAR SERIES AND LAUNCHING A COMMUNITY-WIDE SURVEY TO GATHER INSIGHTS WHICH WERE INCORPORATED IN THE FINAL DRAFT OF THE NRB. MULTIPLE PEER REVIEWED MANUSCRIPTS DESCRIBING THE INITIATIVE WERE PUBLISHED.COMMUNITY VOICES IN RESEARCH (CVR): CVR IS A COMMUNITY-POWERED REGISTRY INTENDED TO CAPTURE THE EXPERIENCE OF LIVING WITH A BLEEDING DISORDER DIRECTLY FROM THOSE AFFECTED AND THEIR IMMEDIATE RELATIVES. IT PROVIDES AN INTIMATE LOOK OF THE LIVED EXPERIENCE AND AIMS TO UNDERSTAND AND IMPROVE KEY ASPECTS OF HEALTH-RELATED QUALITY OF LIFE (QOL), IDENTIFY RESEARCH QUESTIONS IMPORTANT TO COMMUNITY MEMBERS, AND PROVIDE VETTED RESOURCES AND OTHER RESEARCH OPPORTUNITIES TO PARTICIPANTS. AN IMPROVED VERSION OF THE REGISTRY WAS LAUNCHED IN SEPTEMBER OF 2023. SEVERAL PRESENTATIONS AND ABSTRACTS WERE PRESENTED AND PUBLISHED.VIRTUAL ADVISORY PANELS (VAPS) & IN PERSON ADVISORY PANELS (PAPS): VAPS AND PAPS ARE VIRTUAL AND IN-PERSON FOCUS GROUPS. TEN VAPS AND ONE PAP WERE FACILITATED IN 2023. INFORMATION GATHERED FROM 80 ADVISORS PROVIDED PATIENT/CAREGIVER INSIGHTS ON EDUCATIONAL RESOURCES, HEALTH LITERACY, CLINICAL TRIAL DESIGN, IDENTIFYING DISPARITIES AND GAPS IN CARE. TOPICS EXPLORED INCLUDED: THE ROLE OF THE IMMUNE SYSTEM IN INVESTIGATIONAL GENE THERAPY; ROLES AND PERSPECTIVE CAREGIVERS PLAY IN THE TREATMENT, EDUCATION, AND CARE FOR PATIENTS WITH HEMOPHILIA; CHALLENGES OF PATIENT ENGAGEMENT IN THERAPY MANAGEMENT; BENEFITS AND CHALLENGES OF SUPPORTING FEDERALLY SUPPORTED BLEEDING DISORDER TREATMENT CENTERS; AND DIVERSITY, EQUITY, AND INCLUSION IN HEALTHCARE FOR INDIVIDUALS WITH BLEEDING DISORDERS.RESEARCH JOURNAL CLUB: THE VIRTUAL RESEARCH JOURNAL CLUB WAS OPEN TO THE COMMUNITY, RESEARCHERS, CLINICIANS, AND CHAPTERS. NBDF HELD TWO SESSIONS IN 2024. MEDICAL EDUCATION CREDITS FOR PHYSICIANS, NURSES, AND MID-LEVEL PROVIDERS WERE PROVIDED. THESE EVENTS WERE RECORDED AND ARE ACCESSIBLE ON THE NBDF WEBSITE WITH ENDURING CREDITS. - SPRING 2023: TAM PERRY & SARA SCHWARTZ PRESENTED AGING MATTERS FOR THOSE WITH HEMOPHILIA. - WINTER 2023: DR. TAMMI SINGLETON, CSO OF ATHN ADAMTS13 ENZYME REPLACEMENT IN PATIENTS WITH HTTP.RESEARCH FUNDED THROUGH NBDF RESEARCH GRANT AWARDS & FELLOWSHIPS: IN 2023 NBDF FUNDED A TOTAL OF 5 RESEARCH PROJECTS. JUDITH GRAHAM POOL POSTDOCTORAL RESEARCH FELLOWSHIPS WERE AWARDED TO THE FOLLOWING RESEARCHERS AND INSTITUTIONS RESPECTIVELY: - QIANG LIANG, EMORY UNIVERSITY - TOMASZ KAMINSKI UNIVERSITY OF PITTSBURG AND VERSITI. THE CAREER DEVELOPMENT AWARD (CDA) AWARD A 3-YEAR GRANT TO AN ESTABLISHED INVESTIGATOR, PREFERABLY AT THE ASSISTANT PROFESSOR LEVEL OR ABOVE, WHO HAS DEMONSTRATED A COMMITMENT TO BLEEDING DISORDERS RESEARCH. THE 2023 CDA WAS AWARDED TO: - MARIE HOLLENHORST OF THE BRIGHAM & WOMEN'S HOSPITAL THE EXCELLENCE FELLOWSHIPS PROVIDE SUPPORT TO PERSONS EMPLOYED IN THE ALLIED HEALTH DISCIPLINES WITH THE FEDERALLY FUNDED TREATMENT CENTER SYSTEM TO EXPAND THE KNOWLEDGE BASE SPECIFIC TO BLEEDING DISORDERS. THE FOLLOWING FELLOWSHIPS WERE AWARDED TO A NURSE AND SOCIAL WORKER: - SOCIAL WORK EXCELLENCE FELLOWSHIP: TAM PERRY OF WAYNE STATE UNIVERSITY - NURSING EXCELLENCE FELLOWSHIP: JOSEPH STANCO OF THE FEINSTEIN INSTITUTES FOR MEDICAL RESEARCHCOREHEM MENTAL HEALTH OUTLOOK TOOL: DEVELOPED THROUGH AN INITIATIVE CO-LED BY NBDF, COREHEM MENTAL HEALTH OUTLOOK QUESTIONNAIRE (COREHEM-MHO) IS A PATIENT-REPORTED OUTCOME MEASUREMENT INSTRUMENT THAT ASSESSES MENTAL HEALTH OUTLOOK (INCLUDING PSYCHOLOGICAL STATUS AND EMOTIONAL FUNCTIONING) ASSOCIATED WITH RECEIVING GENE THERAPY OR ANY DURABLE TREATMENT FOR HEMOPHILIA. THE COREHEM-MHO INSTRUMENT IS OWNED BY NBDF AND AVAILABLE FOR USE IN RESEARCH AND WITHIN CLINICAL TRIAL SETTINGS THROUGH A LICENSE AGREEMENT. A TOTAL OF 7 ORGANIZATIONS HAVE LICENSED THE TOOL FROM NBDF.GeographiesNot indicatedDatesJan 1, 2023 – Dec 31, 2023Source990No causes providedNo populations provided–$4.2M
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