The National Hemophilia Foundation

THE NATIONAL HEMOPHILIA FOUNDATION (NHF) IS DEDICATED TO FINDING CURES FOR INHERITABLE BLOOD DISORDERS AND TO ADDRESSING AND PREVENTING THE COMPLICATIONS OF THESE DISORDERS THROUGH RESEARCH, EDUCATION, AND ADVOCACY ENABLING PEOPLE AND FAMILIES TO THRIVE.

COMMUNITY SERVICESNHF'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, NHF 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 NHF 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. 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 NHF'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 TAKES PLACE EACH YEAR IN EARLY MARCH. THE PAST TWO YEARS (2020 AND 2021) WERE HELD VIRTUALLY. PLANS TO RETURN TO IN PERSON IN 2023. CONSUMERS ARE ALSO ENCOURAGED TO ATTEND STATE ADVOCACY DAYS AT THEIR LOCAL STATE CAPITAL. NHF 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. NHF HOSTS ABOUT 25-30 STATE ADVOCACY DAYS PER YEAR.

HEALTH EDUCATION AND TRAININGNHF PROVIDED FUNDING AND CREATED EDUCATIONAL CONTENT FOR THOSE WITH RARE FACTOR DEFICIENCIES AND PLATELET DISORDERS AND THEIR FAMILIES VIRTUALLY THROUGH NHF'S 2021 RARE BLEEDING DISORDERS QUARTERLY WEBINAR SERIES, SERVING OVER 236 ATTENDEES, AND THROUGH DEVELOPMENT OF EDUCATIONAL BOOKLETS ON LIVING WITH A RARE FACTOR DEFICIENCY. NHF ALSO ORGANIZED QUARTERLY VIRTUAL INHIBITOR EDUCATION WEBINAR SERIES AND A VIRTUAL SPANISH INHIBITOR WEBINAR SERIES, FOR PATIENTS AND FAMILIES EXPERIENCING THE COMPLICATION OF AN INHIBITOR. THESE WEBINARS PROVIDED EDUCATION AND PEER CONNECTIONS FOR 367 PARTICIPANTS.THE PRIMARY GOALS OF THE NATIONAL HEMOPHILIA FOUNDATION'S (NHF'S) VICTORY FOR WOMEN AND BETTER YOU KNOW PROGRAMS ARE: 1) TO INCREASE AWARENESS TO FACILITATE EARLY AND ACCURATE DIAGNOSES; AND 2) TO PROVIDE AFFECTED WOMEN WITH EDUCATION AND SUPPORT. 2021 HIGHLIGHTS INCLUDED SOCIAL MEDIA CAMPAIGNS TO RAISE AWARENESS, AN EDUCATIONAL TRACK FOR FEMALE CONSUMERS AT THE NHF 2021 BLEEDING DISORDERS CONFERENCE AND PROVIDING WORKSHOPS/WEBINARS FOR CONSUMERS AT CHAPTER EDUCATION DAYS AND WOMEN'S RETREATS. IN ADDITION, IN 2021, OVER 2,400 WOMEN TOOK THE BETTER YOU KNOW RISK ASSESSMENT TOOL AND 80% HAD SYMPTOMS OF A BLEEDING DISORDER AND OVER 6,300 VISITED VICTORYFORWOMEN.ORG.STEPS FOR LIVING IS A MULTIMEDIA EDUCATIONAL PROGRAM DESIGNED TO INCREASE ACCESS TO AGE AND CULTURALLY APPROPRIATE INFORMATION SO THAT CHILDREN, TEENS, ADULTS, AND FAMILIES CAN MANAGE THE DAILY CHALLENGES OF LIVING WITH A BLEEDING DISORDER. THIS ALSO INCLUDES ENSURING SUCCESSFUL LIFE TRANSITIONS AND PREVENTING SECONDARY COMPLICATIONS. IN 2021, STEPSFORLIVING.HEMOPHILIA.ORG HAD OVER 166,000 SESSIONS AND IS CURRENTLY UNDERGOING A WEBSITE REDESIGN AND REWRITE THAT SHOULD LAUNCH IN 2023. NHF'S EDUCATION FOR EMPOWERMENT PROGRAM BRINGS WORKSHOPS OUT TO LOCAL CHAPTER AND HTC EVENTS. NHF FACILITATED 30 WORKSHOPS/WEBINARS IN ENGLISH AND SPANISH, WITH OVER 400 PARTICIPANTS IN 2021. HOT TOPICS 2021 WERE WOMEN WITH BLEEDING DISORDERS, VWD, MENTAL HEALTH AND HEMOPHILIA TREATMENT: NOW AND THE FUTURE. NHF HAS DESIGNED THE NATIONAL YOUTH LEADERSHIP INSTITUTE (NYLI) TO ASSIST YOUNG PEOPLE FROM THE BLEEDING DISORDERS COMMUNITY TO BECOME WELL-TRAINED, RECOGNIZED LEADERS. NHF ACHIEVES THESE OUTCOMES BY PROVIDING YOUNG ADULTS WITH TRAINING, SUPPORT AND OPPORTUNITIES TO PROVIDE EDUCATION TO THE BLEEDING DISORDERS COMMUNITY. IN 2021, NHF PROVIDED TRAININGS TO THE 17 MEMBERS OF NYLI ON TOPICS INCLUDING PUBLIC SPEAKING, ADVOCACY, NON-PROFIT MANAGEMENT AND FUNDRAISING. NYLI MEMBERS ADVOCATED ON BEHALF THEIR STATES VIRTUALLY IN AN ANNUAL WASHINGTON DAY EVENT, DEVELOPED EDUCATIONAL CONTENT, AND FACILITATED SESSIONS AT NATIONAL MEETINGS. NHF DEVELOPED NUMEROUS EDUCATIONAL COMPONENTS TO ITS GENE AND INNOVATIVE 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. THE WEBPAGES HAD OVER 7000 VIEWS. IN 2021 NHF ORGANIZED AND PRESENTED 4 EDUCATIONAL TRACKS FOR HEALTHCARE PROVIDERS AT THE VIRTUAL BLEEDING DISORDERS CONFERENCE. THIS INCLUDED PHYSICIANS, PHYSICIAN ASSISTANTS, NURSE PRACTITIONERS, PHARMACISTS, NURSES, SOCIAL WORKERS AND PHYSICAL THERAPISTS. EACH OF THE 4 TRACKS CONTAINED 10-12 HOURS OF EDUCATIONAL CONTENT AND WERE OFFERED CONTINUING EDUCATION CREDIT. NHF, IN PARTNERSHIP WITH MEDSCAPE EDUCATION OFFERED TWO OPPORTUNITIES FOR HEALTHCARE PROVIDERS TO GAIN KNOWLEDGE ABOUT GENE THERAPY. "FROM PRINCIPLES TO PRACTICE: PREPARING FOR THE ADVENT OF GENE THERAPY" WAS MADE AVAILABLE AS AN ONLINE MODULE THROUGH MEDSCAPE AND PROVIDED CONTINUING EDUCATION FOR ONE YEAR. THE SECOND PROGRAM ENTITLED, "GENE THERAPY AND HEMOPHILIA CARE UPDATES: BRINGING YOUR TREATMENT CENTER UP TO SPEED", WAS A PRECONFERENCE SYMPOSIUM OFFERED AT THE AMERICAN SOCIETY OF HEMATOLOGY ANNUAL MEETING IN DECEMBER 2021.NHF HOSTED THE 16TH WORKSHOP ON NOVEL TECHNOLOGIES AND GENE TRANSFER FOR HEMOPHILIA. THIS WORKSHOP BRINGS RESEARCHERS FROM AROUND THE WORLD TO PRESENT THEIR LATEST FINDINGS AND DISCUSS WITH THEIR PEERS. IT WAS PRESENTED IN A HYBRID FORMAT WITH BOTH IN-PERSON AND VIRTUAL OPTIONS AND INVITATION ONLY IN ORDER TO PROMOTE OPEN CONVERSATIONS AMONG THE RESEARCHERS.NHF'S MEDICAL AND SCIENTIFIC ADVISORY COUNCIL (MASAC) HELD TWO VIRTUAL MEETINGS AND APPROVED THREE NEW DOCUMENTS THAT WERE DISTRIBUTED TO THE COMMUNITY. THE DOCUMENTS ARE:MASAC DOCUMENT #264 MASAC RECOMMENDATIONS REGARDING DIAGNOSIS AND MANAGEMENT OF INHERITED BLEEDING DISORDERS IN GIRLS AND WOMEN WITH PERSONAL AND FAMILY HISTORY OF BLEEDINGMASAC DOCUMENT #265 MASAC GUIDELINES FOR PREGNANCY AND PERINATAL MANAGEMENT OF WOMEN WITH INHERITED BLEEDING DISORDERS AND CARRIERS OF HEMOPHILIA A OR BMASAC DOCUMENT #266 MASAC RECOMMENDATIONS REGARDING THE TREATMENT OF VON WILLEBRAND DISEASETHE NHF NURSING WORKING GROUP PRODUCED TWO NEW DOCUMENTS, THE NWG INFUSION THERAPY GUIDELINES AND THE NWG EMICIZUMAB SUBCUTANEOUS INJECTION GUIDELINES.NUMEROUS ARTICLES WERE WRITTEN AND POSTED ON THE NHF WEB SITE IN THE AREAS OF MEDICAL AND INDUSTRY NEWS PROVIDING UPDATES TO THE COMMUNITY ON PRODUCT ADVANCEMENTS AND RESEARCH STUDY PROGRESS. NHF'S INFORMATION RESOURCE CENTER (HANDI) ANSWERS REQUESTS FROM EVERYONE IN THE COMMUNITY AND THE GENERAL PUBLIC ON INHERITABLE BLEEDING DISORDERS AND PROVIDES RESOURCES AND REFERRALS TO BEST ASSIST EVERY INDIVIDUAL ON A DAILY BASIS. -OVER 1,000 HEALTHCARE PROVIDERS ATTENDED NHF'S VIRTUAL BLEEDING DISORDER CONFERENCE-60 IN-PERSON AND 60 VIRTUAL ATTENDEES OF NHF'S 16TH WORKSHOP ON NOVEL TECHNOLOGIES AND GENE TRANSFER FOR HEMOPHILIA WORKSHOP-100 IN-PERSON AND 200 VIRTUAL ATTENDEES OF THE NHF/MEDSCAPE PRE-CONFERENCE SYMPOSIUM AT THE AMERICAN SOCIETY OF HEMATOLOGY ANNUAL MEETING-38 NEWS STORIES AND 8 SUMMARIES OF PEER REVIEWED JOURNAL ARTICLES POSTED ON NHF WEB SITE-1,207 REQUESTS FOR INFORMATION WERE ANSWERED THROUGH HANDI

RESEARCHNHF IN COLLABORATION WITH THE AMERICAN THROMBOSIS AND HEMOSTASIS NETWORK (ATHN), EXTENSIVELY ENGAGED THE COMMUNITY IN LISTENING SESSIONS AND SURVEYS. SIX WORKING GROUPS WERE DEVELOPED AND GIVEN THE CHARGE TO IDENTIFY, UNDERSTAND, AND PRIORITIZE RESEARCH QUESTIONS BASED UPON THIS EXTENSIVE COMMUNITY INPUT FROM PERSONS WITH AN INHERITED BLEEDING DISORDER, THEIR FAMILIES, HEALTHCARE PROVIDERS, OTHER PATIENT ADVOCACY ORGANIZATIONS, GOVERNMENT OFFICIALS, AND INDUSTRY. ON SEPTEMBER 12 TO 15, 2021, NHF HOSTED A VIRTUAL STATE OF THE SCIENCE RESEARCH SUMMIT (SOSRS), TO PRESENT THE WORKING GROUPS FINDINGS AS WELL AS OFFER AN OPPORTUNITY FOR ALL COMMUNITY MEMBERS TO WEIGH IN ON THE RESEARCH QUESTIONS AND INFRASTRUCTURE INITIATIVES PRIORITIZED BY THE WORKING GROUPS THAT HAD MET OVER THE COURSE OF THE PREVIOUS 6 MONTHS. THE SUMMIT, SUPPORTED ENTIRELY BY NHF, WITH NO FUNDING FROM INDUSTRY OR COMMERCIAL PARTNERS, WAS OPEN TO ALL WITHOUT CHARGE. THE NHF SOSRS WAS WELL ATTENDED WITH 441 UNIQUE ATTENDEES FROM ALL STAKEHOLDER GROUPS. SOCIAL MEDIA IMPACT WAS TREMENDOUS. TWITTER FOLLOWERS INCREASED BY 21% WITH A 108% INCREASE IN TWEETS AND A 65% INCREASE IN MENTIONS OVER NHF NORMAL ACTIVITY. INSTAGRAM INCREASED IMPRESSIONS BY 60% AND ENGAGEMENTS BY 16.5%. FACEBOOK IMPRESSIONS INCREASED BY 376% WITH A 576% INCREASE IN ENGAGEMENTS AND A 550% INCREASE IN POST LINK CLICKS. AND FINALLY, LINKEDIN IMPRESSIONS INCREASED BY 1275% AND ENGAGEMENTS 2620%. NHF OBTAINED AN NHLBI GRANT TO INCREASE OUTREACH TO, AND REDUCE THE BURDEN OF PARTICIPATION ON, UNDER-REPRESENTED POPULATIONS THROUGH THE ORGANIZATION AND FACILITATION OF REMOTE PARTICIPATION GROUPS (RPG). THIS OPTION WAS OFFERED TO GROUPS OF BLACK/AFRICAN AMERICANS, LATINX AMERICANS, ASIAN AMERICANS, INDIGENOUS AMERICANS, THE LGBTQ+ COMMUNITY, THE AGEING COMMUNITY, AND THOSE LIVING RURALLY OR GEOGRAPHICALLY CHALLENGED. FIVE RPGS WITH 3 TO 15 PARTICIPANTS EACH, FOR A TOTAL OF 40, AMPLIFIED INPUT FROM: BLACK/AFRICAN AMERICANS, AGEING MEN, THE LGBTQ+ COMMUNITY, WOMEN, AND HISPANIC WOMEN (RPG CONDUCTED IN SPANISH). RPGS MET VIRTUALLY OR GATHERED LOCALLY, PER PREFERENCES AND PANDEMIC RESTRICTIONS, ONCE, TO VIEW THEIR CHOICE OF SOSRS SESSIONS (LIVE OR RECORDED) WITH ONE OR TWO FACILITATORS. FACILITATORS OFFERED EXPLANATIONS TO EMPOWER RPG MEMBERS' UNDERSTANDING OF THE CONTENT AND CONFIDENCE IN RESPONDING TO IT. THEIR FEEDBACK WAS TRANSMITTED TO THE WGS AND THE FINAL SOSRS. THESE GROUPS CONTINUE TO MEET AND BE ENGAGED WITH NHF TO WORK ON RESEARCH ISSUES.NHF CONTINUED TO SUPPORT THE FOLLOWING RESEARCH INITIATIVES:CROSS-CULTURAL COVID-19 SURVEY IN INHERITED BLEEDING DISORDERS - AN INTERNATIONAL CROSS-SECTIONAL DESCRIPTIVE COLLABORATIVE (US, UK, AND GERMANY) RESEARCH SURVEY WITH AIMS TO: -ASSESS THE COVID-ASSOCIATED IMPACT AND PSYCHOLOGICAL CHALLENGES FACING THE IBD COMMUNITY IN THE USA, UK, AND GERMANY -DESCRIBE THE SIMILARITIES AND DIFFERENCES AMONG THE FOUR COUNTRIES-IDENTIFY AREAS OF NEED AND POTENTIAL INTERVENTION BY ADVOCACY.CVR (COMMUNITY VOICES IN RESEARCH) - A PATIENT POWERED REGISTRY INTENDED TO CAPTURE A 360-DEGREE VIEW OF LIVING WITH A BLEEDING DISORDER, DIRECTLY FROM THOSE AFFECTED AND THEIR RELATIVES TO ENHANCE THE ABILITY OF RESEARCHERS TO IMPROVE QUALITY OF LIFE (QOL), CURRENT TREATMENTS, IDENTIFY RESEARCH QUESTIONS IMPORTANT TO COMMUNITY MEMBERS, DISCOVER TRANSFORMATIONAL THERAPIES. RESEARCH JOURNAL CLUBS WERE ALSO INITIATED WITH 2 JOURNAL CLUBS HELD OFFERING CONTINUING MEDICAL EDUCATION CREDITS:THE COMPLEXITY OF CARE FOR WOMEN AND GIRLS WITH AN INHERITED BLEEDING DISORDER: ADVANCES IN GENETICS, DIAGNOSIS, TREATMENT, AND WOMEN'S HEALTH HELD IN JULY 2021 AND NUMEROUS PERSPECTIVES, ONE GOAL: ACHIEVING OPTIMAL PAIN MANAGEMENT IN IBDS.A TOTAL OF FOUR NHF JUDITH GRAHAM POOL POSTDOCTORAL RESEARCH FELLOWSHIPS WERE AWARDED TO THE FOLLOWING RESEARCHERS AND INSTITUTIONS RESPECTIVELY: SHABBIR AHMED ANSARI, PH.D. FOR THE PROJECT, "A COMPREHENSIVE ANALYSIS OF FREQUENTLY OCCURRING HUMAN F3 GENE MUTATIONS AND THEIR IMPACT ON HEMOSTATIC FUNCTION OF TISSUE FACTOR" AT THE BETH ISRAEL DEACONESS MEDICAL CENTER IN BOSTON, MASSACHUSETTS. SEAN M QUINN, PH.D. FOR THE PROJECT, "ANTIBODY-MEDIATED FV/FVA RESISTANCE AS A THERAPEUTIC APPROACH FOR HEMOPHILIA" AT THE UNIVERSITY OF PENNSYLVANIA AND THE CHILDREN'S HOSPITAL OF PHILADELPHIA, PENNSYLVANIA.VISHAL SRIVASTAVA, PH.D. FOR THE PROJECT, "RESCUE OF FVIII MUTANT EXPRESSION BY TRANSLATIONAL AND POST-TRANSLATIONAL MODULATION USING SMALL MOLECULE THERAPY" AT OHIO STATE UNIVERSITY, COLUMBUS, OHIO. YUAN ZHANG, PH.D. FOR THE PROJECT, "ROLES OF THE B DOMAIN IN REGULATING THE SYNTHESIS AND SECRETION OF FVIII" AT THE LERNER RESEARCH INSTITUTE, CLEVELAND CLINIC. THE INNOVATIVE INVESTIGATOR RESEARCH AWARD (IIRA) PROVIDES RESEARCH AWARDS TO ANY HEALTH CARE PROVIDER ON THE MULTI-DISCIPLINARY TEAM WITHIN THE HEMOPHILIA TREATMENT CENTER (HTC) NETWORK FOR INNOVATIVE PROJECTS THAT PROMOTE THE DEVELOPMENT OF NOVEL TECHNOLOGIES AND/OR THERAPIES TO ADVANCE THE FIELD OF BLEEDING DISORDERS RESEARCH. ONE IIRA WAS AWARDED IN 2021 TO THE FOLLOWING INSTITUTION AND RESEARCHER:KUMSKOVA MARIIA, MD FOR THE PROJECT "PLATELET DYSFUNCTION IN EHLERS-DANLOS PATIENTS WITH BLEEDING PHENOTYPE" AT THE UNIVERSITY OF IOWA HOSPITALS & CLINICS, IOWA CITY, IA. THE CAREER DEVELOPMENT AWARD (CDA) AWARDS A 3-YEAR GRANT AN ESTABLISHED INVESTIGATOR, PREFERABLY AT THE ASSISTANT PROFESSOR LEVEL OR ABOVE, WHO HAS DEMONSTRATED A COMMITMENT TO BLEEDING DISORDERS RESEARCH. THE 2021 CDA WAS AWARDED TO:DR. BENJAMIN SAMELSON-JONES FOR THE PROJECT TITLED, "PROTEIN ENGINEERING FOR AN OPTIMIZED FACTOR VIII FOR HEMOPHILIA A THERAPY" AT THE PERELMAN SCHOOL OF MEDICINE UNIVERSITY OF PENNSYLVANIA; DEPARTMENT OF PEDIATRICS/DIVISION OF HEMATOLOGY AT THE CHILDREN'S HOSPITAL OF PHILADELPHIA, PA. ESTABLISHED IN 2021, THE JEANNE MARIE LUSHER (JML) DIVERSITY RESEARCH FELLOWSHIPS AIMS TO INCREASE DIVERSITY AMONG BENIGN HEMATOLOGISTS BY FOSTERING A CAREER-LONG INTEREST IN INHERITED BLEEDING/BLOOD DISORDERS (IBDS). OPEN TO BLACK, INDIGENOUS, AND PEOPLE OF COLOR (BIPOC) WHO ARE ENROLLED IN A DOCTORAL PROGRAM IN A BIOMEDICAL FIELD RELEVANT TO INHERITABLE BLEEDING/BLOOD DISORDERS, THE GOAL OF THE JML IS TO IDENTIFY CLINICIANS FROM UNDER-REPRESENTED COMMUNITIES AND GENDERS EARLY IN THEIR CAREER AS WELL AS THOSE WHO MAY BE IN A FELLOWSHIP PROGRAM DEMONSTRATING INTEREST IN BASIC SCIENCE AND PRE-CLINICAL RESEARCH BLOOD DISORDERS WITH THE EXCEPTION OF THROMBOPHILIA AND ESTABLISH AN INTEREST IN IBDS THAT WILL SUSTAIN THEM THROUGHOUT THEIR CAREERS. TWO FELLOWSHIPS WERE AWARDED TO: DR. OLUBUSOLA OLUWOLE FOR THE PROJECT TITLED, " A PROSPECTIVE STUDY OF CLINICAL AND IMAGING ASSESSMENT OF COGNITIVE FUNCTION AND ITS ASSOCIATION WITH ANEMIA IN ADULTS WITH SICKLE CELL DISEASE" AT THE UNIVERSITY OF WASHINGTON IN SEATTLE, WA.DR. SHANI JOHNSON FOR THE PROJECT TITLED, "DETERMINING CLINICAL SEVERITY AND MOLECULAR PROFILES OF ACUTE CHEST SYNDROME IN SICKLE CELL DISEASE" AT THE BAYLOR COLLEGE OF MEDICINE AND TEXAS CHILDREN'S HOSPITAL IN HOUSTON, TEXAS.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, PHYSICAL THERAPIST AND SOCIAL WORKER:TRACEY GASLIN, PHD, FOR THE PROJECT TITLED, "HEALTH SERVICES GUIDE FOR BLEEDING DISORDER CAMPS" AT THE UNIVERSITY OF LOUISVILLE HEMOPHILIA TREATMENT CENTER IN LOUISVILLE, KY.ELIZABETH HALL, PT, MS FOR THE PROJECT TITLED, "PILOT STUDY OF TELEMEDICINE VS IN PERSON PHYSICAL THERAPY INTERVENTION FOR HEMOPHILIA" AT THE RADY CHILDREN'S HOSPITAL SAN DIEGO HEMOPHILIA TREATMENT CENTER IN SAN DIEGO, CA.AMANDA STAHL, MSW, LICSW FOR THE PROJECT TITLED, "POST-TRAUMATIC STRESS DISORDER (PTSD) AND POSTTRAUMATIC STRESS SYMPTOMS (PTSS) AMONG ADULTS WITH HEMOPHILIA A AND B" AT THE BOSTON HEMOPHILIA CENTER AT BRIGHAM AND WOMEN'S HOSPITAL IN BOSTON, MA.

CHAPTER SERVICES NHF'S CHAPTER SERVICES DEPARTMENT PROVIDES COMMUNITY SUPPORT BY HELPING ITS 53 MEMBER CHAPTERS OFFER EDUCATION, RESOURCES AND REFERRALS TO AFFECTED MEMBERS OF THE BLEEDING DISORDERS COMMUNITY IN THE AREAS THAT EACH CHAPTER SERVES. CHAPTER SERVICES OFFERS THE CHAPTERS FINANCIAL SUPPORT IN THE FORM OF GRANTS, SPONSORS TRAINING MEETINGS AND PROVIDES SOME HOTEL EXPENSE SUPPORT FOR ADVOCACY MEETINGS. DEPARTMENT STAFF MEMBERS COACH CHAPTER LEADERS ON HOW TO CREATE, EXECUTE AND EVALUATE PROGRAMS AND SERVICES DESIGNED FOR THEIR AFFECTED CONSTITUENTS. IN 2021 CHAPTER SERVICES HELD ONE NATIONAL LEADERSHIP SEMINAR OFFERING TRAINING THAT FOCUSED ON DIVERSIFICATION OF FUNDING STRATEGIES, BOARD DEVELOPMENT, BUILDING COMMUNITY OF VOLUNTEERS AND ADVOCATES AND MORE. A FULL "CHAPTER TRAINING TRACK" WAS ALSO OFFERED DURING NHF'S 2021 VIRTUAL BLEEDING DISORDERS CONFERENCE.