2023-10-13T09:04:29-05:00 2022-12-31 873231666 PKF O'CONNOR DAVIES ADVISORY LLC 20 COMMERCE DRIVE SUITE 301 CRANFORD NJ 070163618 990 2022-01-01 135641857 NATIONAL BLEEDING DISORDERS FOUNDATION NATI 2123283700 1230 AVENUE OF THE AMERICAS 16TH F NEW YORK NY 10020 PETER HARVEY CHIEF BUSINESS OFFICER 2123283700 2023-10-13 1 PETER HARVEY 999009999 0 GARRETT M HIGGINS P00543209 9082726200 2023-10-05 3 AAL1 IAL1 2022 2023-04-26 12:10:37Z PETER HARVEY 1230 AVENUE OF THE AMERICAS 16TH FL NEW YORK NY 10020 18372090 0 X WWW.HEMOPHILIA.ORG X 1948 NY THE NATIONAL BLEEDING DISORDERS FOUNDATION (NBDF) FORMERLY 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. 11 11 124 1010 1000348 342256 22875439 16663253 1209918 1221641 2891140 400817 -536975 -135543 26439522 18150168 1372308 1381783 0 0 10387265 11406289 0 0 1366784 6797496 10277713 18557069 23065785 7882453 -4915617 46786068 37819346 5925104 6435629 40860964 31383717 X THE NATIONAL BLEEDING DISORDERS FOUNDATION (NBDF) FORMERLY 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. 0 0 5899711 131153 221293 HEALTH EDUCATION AND TRAININGNHF LAUNCHED VARIOUS NEW INITIATIVES IN 2022 TO IDENTIFY BARRIERS AND IMPROVE EQUITABLE ACCESS TO INCLUSIVE EVIDENCE-BASED EDUCATION ABOUT LIVING WITH AN INHERITABLE BLEEDING DISORDER. THE HEALTH EQUITY THROUGH HTC PILOT PROJECT ENGAGING BLACK AND AFRICAN-AMERICAN PATIENTS IN BETTER UNDERSTANDING THEIR EXPERIENCE AT THEIR HTC, AS WELL AS SHARING FEEDBACK AND ACTION PLANNING WITH HTC STAFF, ALSO LED TO TOOL KITS FOR FAMILIES AND FOR HEALTH CARE PROVIDERS. NHF ALSO LAUNCHED MASAC FOR YOU, STARTING WITH THE TOPIC OF NAVIGATING EMERGENCY DEPARTMENT VISITS, ENSURING THAT MASAC GUIDELINES ARE EXPLAINED IN SIMPLE PLAIN LANGUAGE ACCESSIBLE TO ALL TO USE IN SELF-ADVOCACY. NHF ALSO CREATED NEW PUBLICATIONS IN ENGLISH AND SPANISH FOR GLANZMANN'S THROMBASTHENIA AND FACTOR VII (7) DEFICIENCY. NHF ALSO DEVELOPED VWD GUIDELINES SUMMARY SHEETS TO HELP AS A PATIENT TOOL FOR SELF-ADVOCACY.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. 2022 HIGHLIGHTS INCLUDE THE LAUNCH OF A NEW PROGRAM, JOURNEY TO KNOW, WHERE WOMEN WITH SYMPTOMS JOIN A 3 MONTH PROGRAM GETTING MORE INFORMATION AND SUPPORT ON THE PATH TO DIAGNOSIS. IN 2022, OVER 4500 WOMEN TOOK THE BETTER YOU KNOW RISK ASSESSMENT TOOL, 75% HAD SYMPTOMS OF A BLEEDING DISORDER, AND OVER 5,700 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. NHF CONTINUES TO WORK ON THE REDESIGN AND RELAUNCH FOR 2024. IN 2022, STEPSFORLIVING.HEMOPHILIA.ORG HAD OVER 87,000 SESSIONS. NHF'S EDUCATION FOR EMPOWERMENT PROGRAM BRINGS WORKSHOPS OUT TO LOCAL CHAPTER AND HTC EVENTS. NHF FACILITATED 68 WORKSHOPS IN ENGLISH AND SPANISH, WITH OVER 1,300 PARTICIPANTS IN 2022. HOT TOPICS 2022 WERE AGING WITH A BLEEDING DISORDER, MENTAL HEALTH: A DEEPER DIVE, AND SHARED DECISIONS MAKING AND THE SHIFT TO PERSON CENTERED CARE. 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 PROVIDES YOUNG ADULTS WITH TRAINING, SUPPORT AND OPPORTUNITIES TO PROVIDE EDUCATION TO THE BLEEDING DISORDERS COMMUNITY. IN 2022, NHF PROVIDED TRAININGS TO THE 16 MEMBERS OF NYLI ON TOPICS INCLUDING PUBLIC SPEAKING, ADVOCACY, NON-PROFIT MANAGEMENT AND FUNDRAISING. 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 8000 VIEWS AND THESE SESSIONS AT THE BLEEDING DISORDERS CONFERENCE CONTINUE TO BE THE BEST ATTENDED. NHF PRODUCED 4 LIVE VIRTUAL PROGRAMS ON NOVEL TREATMENT THERAPIES THAT WAS FUNDED THROUGH A COOPERATIVE AGREEMENT WITH THE CENTERS FOR DISEASE CONTROL AND PREVENTION. THESE WERE OFFERED AS A COLLABORATIVE LEARNING EXCHANGE TO PHYSICIANS, NURSE PRACTITIONERS, AND PHYSICIAN ASSISTANTS ON THE FOLLOWING TOPICS: "UNDERSTANDING MECHANISMS OF ACTION AND UTILITY OF NOVEL TREATMENTS FOR HEMOPHILIA A AND B", "SHARED DECISION MAKING IN THE AGE OF NOVEL TECHNOLOGIES", MANAGING COMPLEX CASES WITH NOVEL NON-FACTOR THERAPIES", AND "NAVIGATING REIMBURSEMENT FOR PATIENTS ON NON-FACTOR THERAPY."AT NHF'S 74TH BLEEDING DISORDERS CONFERENCE, THE NHF OFFERED 52 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 11.25 AMA PRA CATEGORY 1 CREDITS)- PHARMACISTS (FOR 11.25 ACPE CONTACT HOURS)- NURSES / NURSE PRACTITIONERS (UP TO 13.5 ANCC CONTACT HOURS, WITH AN ADDITIONAL 3.0 CONTACT HOURS RELATED TO PHARMACOTHERAPEUTIC CONTENT) - SOCIAL WORKERS (UP TO 13 ASWB-APPROVED CONTINUING EDUCATION CREDITS)- PHYSICAL THERAPISTS (UP TO 14 CEUS, STATE DEPENDENT)WE OFFERED ALL SESSIONS IN PERSON AND 3 HOURS IN EACH TRACK VIRTUALLY. WE HAD 297 HEALTH CARE PROVIDERS IN PERSON AND 263 ONLINE FOR THE 3 HOUR VIRTUAL SESSIONS.NHF COLLABORATED WITH MEDSCAPE EDUCATION TO OFFER 6 LIVE VIRTUAL GRAND ROUNDS SESSIONS ON "GENE THERAPY FOR PATIENTS WITH HEMOPHILIA." IN COLLABORATION WITH IMPACT EDUCATION A PRIMER AND 2 MODULES ON "STAYING CURRENT: PATIENT EVALUATION AND TREATMENT STRATEGIES TO ACHIEVE HEMOSTASIS AND IMPROVE OUTCOMES IN HEMOPHILIA A AND B" WERE OFFERED TO ALL HEALTH CARE PROVIDERS IN THE US. NHF'S MEDICAL AND SCIENTIFIC ADVISORY COUNCIL (MASAC) ISSUED EIGHT (NEW/UPDATED) DOCUMENTS IN 2022- 267 - MASAC RECOMMENDATION CONCERNING PROPHYLAXIS FOR HEMOPHILIA A AND B WITH AND WITHOUT INHIBITORS - 268 - RECOMMENDATION ON THE USE AND MANAGEMENT OF EMICIZUMAB-KXWH (HEMLIBRA) FOR HEMOPHILIA A WITH AND WITHOUT INHIBITORS- 269- STANDARDS AND CRITERIA FOR THE CARE OF PERSONS WITH CONGENITAL BLEEDING DISORDERS- 270 - RECOMMENDATIONS ON SCREENING FOR DEVELOPMENT OF HEPATOCELLULAR CANCER IN PATIENTS WITH HEPATITIS B AND C- 271 - MASAC RECOMMENDATION ON ADMINISTRATION OF INHIBITOR BYPASSING AGENTS IN THE HOME FOR PATIENTS WITH HEMOPHILIA AND INHIBITORS (REPLACED LATER IN THE YEAR BY #274)- 272 - MASAC RECOMMENDATIONS CONCERNING PRODUCTS LICENSED FOR THE TREATMENT OF HEMOPHILIA AND OTHER BLEEDING DISORDERS- 273 - RECOMMENDATIONS ON GENOTYPING FOR PERSONS WITH HEMOPHILIA- 274 - RECOMMENDATION ON ADMINISTRATION OF INHIBITOR BYPASSING AGENTS IN THE HOME FOR PATIENTS WITH HEMOPHILIA AND INHIBITORSTWO NEW NHF-TAKEDA CLINICAL FELLOWS WERE SELECTED TO RECEIVE MENTORED-TRAINING IN 2022-2024: - HILARY WHITWORTH, MD, CHOP/UNIVERSITY OF PENNSYLVANIA - DEBBIE JIANG, MD, BLOODWORKS NW/UNIVERSITY OF WASHINGTON *HANDI, NHF'S INFORMATION RESOURCE CENTER, PROVIDED CUSTOMIZED RESPONSES TO OVER 600+ PHONE/E-MAIL REQUESTS ABOUT BLEEDING OR OTHER RARE DISORDERS. NEWLY LAUNCHED "HANDI FREQUENTLY ASKED QUESTIONS" PROVIDES TARGETED ANSWERS TO PARENTS/CAREGIVERS, INDIVIDUALS LIVING WITH AN INHERITABLE BLEEDING DISORDER AND HEALTHCARE PROVIDERS. WE AWARDED THE 2022 KEVIN CHILD SCHOLARSHIP TO CHRISTOPHER AMBROSIO OF LYNBROOK, NY. HANDI ALSO WORKED WITH THREE NHF CHAPTERS, UNITED VA, COLORADO, AND NEBRASKA, TO PROMOTE HANDI SERVICES AND SUPPORT STATE OUTREACH EFFORTS. 5029506 215257 0 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 POLICYMAKERS, 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. 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 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. RECENTLY, WE ADAPTED TO A VIRTUAL FORMAT IN THE YEARS 2020-2022. WE RETURNED TO AN IN PERSON EVENT IN 2023 AND PLAN TO DO THE SAME IN 2024-2025. 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 PARTICIPATE IN ABOUT 25-30 STATE ADVOCACY DAYS PER YEAR. 4067409 696862 0 RESEARCHNATIONAL RESEARCH BLUEPRINT: BUILDING UPON THE NHF STATE OF THE SCIENCE RESEARCH SUMMIT (SOS), NHF HAS BEGUN THE CONSTRUCTION OF THE NATIONAL RESEARCH BLUEPRINT (NRB). THIS PROCESS HAS ENGAGED PARTNERS THROUGHOUT THE BLEEDING DISORDER COMMUNITY TO ESTABLISH A CLEAR UNDERSTANDING OF THE MOST IMPORTANT ISSUES AND CHALLENGES FOR PEOPLE AND FAMILIES LIVING WITH BLEEDING DISORDERS. THIS PROCESS IS PATIENT CENTRIC, ENGAGING THE MULTIDISCIPLINARY RESEARCH ENTERPRISE TO CREATE A NATIONAL RESEARCH INFRASTRUCTURE EXPANSION; AND REINVIGORATE A SUSTAINABLE WORKFORCE. THE GLOBAL THEMES ARE PEOPLE CENTRICITY, COLLABORATION, AND HEALTH EQUITY, DIVERSITY, AND INCLUSION. THE THEMES FOCUS ON UNDERSTANDING THE PATHOBIOLOGY OF BLEEDING, NOVEL AND IMPROVED DIAGNOSTICS, NOVEL AND ADAPTED THERAPEUTICS, AND IMPEDIMENTS TO CARE. RESEARCH PRIORITIES INCLUDE BONE AND JOINT HEALTH, INFLUENCE OF SEX AND GENDER ON DISEASE, AGING, IMMUNOGENICITY, MENTAL HEALTH, PAIN, AND RESEARCH INFRASTRUCTURE. THE SOS WORKING GROUPS EVOLVED IN 2021 INTO SEVEN WORKING GROUPS: RESEARCH & DEVELOPMENT, INFRASTRUCTURE, WORKFORCE, HEALTH EQUITY, DIVERSITY, & INCLUSION, LIVED EXPERIENCE EXPERTS (PATIENTS AND FAMILIES), COMMUNITY ENGAGEMENT, AND POLICY. PUBLICATIONS: THREE EDITORIALS FROM THE SOS SUPPORTING THE NRB AND SEVEN ORIGINAL ARTICLES SUMMARIZING THIS WORK WERE SUBMITTED FOR PUBLICATION AT THE END OF 2022.PHASE II BEGAN IN 2022 WITH TWO RESEARCH WORKSHOPS IN THE SPRING IN WASHINGTON DC. NHF PRESENTED THE SOS PRIORITIES TO THE OVER 150 IN ATTENDANCE WITH THE GOAL OF OBTAINING ADDITIONAL COMMUNITY FEEDBACK. THESE MEETINGS ALSO PROVIDED AN OPPORTUNITY TO OUTLINE THE NEXT STEPS: DEFINING THE NRB. THE GOAL OF THIS PHASE IS TO (1) DEVELOP A MULTIDISCIPLINARY 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. 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 IMMEDIATE RELATIVES TO ENHANCE THE ABILITY OF RESEARCHERS TO UNDERSTAND THE LIVED EXPERIENCE, IMPROVE QUALITY OF LIFE (QOL), IDENTIFY RESEARCH QUESTIONS IMPORTANT TO COMMUNITY MEMBERS, DISCOVER TRANSFORMATIONAL THERAPIES. A REDESIGNED REGISTRY WILL LAUNCH IN AUGUST OF 2023.VIRTUAL ADVISORY PANELS (VAPS): VAPS ARE VIRTUAL FOCUS GROUPS. IN 2022 SEVEN VAPS OCCURRED. 50 LEES PARTICIPATED IN TOTAL OF THE NOTED VAPS. TOPICS SPANNED FROM PATIENT EDUCATION, CLINICAL TRIAL DESIGN, AND ENGAGEMENT IN BLEEDING DISORDER PROGRAMS. ADVANCED THERAPEUTIC & MEDICINAL PRODUCTS (ATMP): THIS INITIATIVE FOCUSED ON ENGAGING STAKEHOLDERS FROM INDUSTRY AND ACADEMIC RESEARCH TO FOCUS ON NOVEL SCIENCE. IN 2022, FIVE VIRTUAL MEETINGS OCCURRED WITH 115 ATTENDEES COMBINED. CLINICAL TRIAL PSYCHOSOCIAL TEMPLATE: THE NHF RESEARCH TEAM AND AN AD HOC COMMITTEE FROM THE NHF SOCIAL WORK WORKING GROUP DEVELOPED A PSYCHOSOCIAL TEMPLATE FOR CLINICAL SOCIAL WORK EVALUATION OF INDIVIDUALS CONSIDERING PARTICIPATION IN A CLINICAL TRIAL. THE NEED WAS IDENTIFIED IN 2021 WITH THE EVOLUTION OF GENE THERAPY. THE TOOL WAS PUBLISHED ON THE NHF WEBSITE, PROVIDED TO THE SOCIAL WORK WORKING GROUP, AND REFERENCED AT THE ASH CONFERENCE IN A PANEL DISCUSSION. CLINICAL TRIAL TOOLKIT: CLINICAL TRIAL ESSENTIALS: A VIRTUAL EDUCATION TOOL WAS CREATED AND LAUNCHED ON THE NHF WEBSITE IN 2022 TO ASSIST THE COMMUNITY IN UNDERSTANDING THE BENEFITS AND CONSIDERATIONS OF PARTICIPATION IN A CLINICAL TRIAL. SIX LIVED EXPERIENCE EXPERTS (LEES) AND SIX HEALTH CARE PROVIDERS ENGAGED IN BRIEF INTERVIEWS. MODULES INCLUDE: WHY CLINICAL TRIALS IMPORTANT, UNDERSTANDING CLINICAL TRIALS, WHAT TO EXPECT, UNDERSTANDING CONSENT, WHAT HAPPENS IN A TRIAL, WHEN THE TRIAL ENDS, OTHER WAYS TO PARTICIPATE IN RESEARCH, ADDITIONAL RESOURCES. GENE THERAPY NOVEL TECHNOLOGY WORKSHOP PLANNING: STEERING COMMITTEE: TWO MEETINGS OCCURRED IN 2022 REGARDING THE POTENTIAL COLLABORATIONS AND COMMUNICATION OF THE OUTCOMES OF THE WORKSHOP. NHF MET WITH WFH, ASGCT, ASH, VERSITI, FNIH, ISTH, ATHN, CDC, ARM, FDA SCIENTIFIC PLANNING COMMITTEE: ONE FORMAL MEETING OCCURRED WITH NHF STAFF AND NINE EXTERNAL EXPERTS WHO REVIEWED THE LATEST SCIENTIFIC ADVANCES IN PREPARATION FOR AN EVENT TO BE HELD IN Q1 OF 2023. RESEARCH JOURNAL CLUBS (RJC): THE VIRTUAL RESEARCH JOURNAL CLUB OPEN TO THE COMMUNITY, RESEARCHERS, CLINICIANS, AND CHAPTERS, HELD TWO SESSIONS IN 2022. MEDICAL EDUCATION CREDITS FOR PHYSICIANS, NURSES, AND MID-LEVEL PROVIDERS WERE SPONSORED BY NHF. THESE EVENTS WERE RECORDED AND WILL BE ACCESSIBLE ON THE NHF WEBSITE WITH ENDURING CREDITS. - SPRING 2022: DYNAMICS OF HEMARTHROSIS & VASCULAR REMODELING: LONG-TERM IMPACT OF HYPERTENSION AND JOINT BLEEDS FOR PEOPLE LIVING WITH HEMOPHILIA DR. ANNETTE VON DRYGALSKI 57 ATTENDEES. - FALL 2022: DEPRESSIVE DISORDERS AMONG ADULTS WITH HEMOPHILIA A (DR. JOANNE WU & RANDY CURTIS) 27 ATTENDEES. RESEARCHERS FUNDED THROUGH NHF RESEARCH GRANT AWARDS & FELLOWSHIPS: THE NHF RESEARCH DEPARTMENT EVALUATED THE RESEARCH GRANT AWARDS & FELLOWSHIPS PROGRAM THROUGH A "DEEP DIVE" PROCESS. THIS EXPLORED THE CURRENT GRANT STRUCTURE, PROCESS, AND AREAS OF RESEARCH SUPPORT; AS WELL AS POTENTIAL COLLABORATIONS WITH OTHER ORGANIZATIONS TO STREAMLINE EFFORTS AND ENHANCE EFFICIENCY. THIS PROCESS ENGAGED THIRTEEN EXTERNAL SUBJECT MATTER EXPERTS ACROSS THE COMMUNITY IN THREE MEETINGS AND VARIOUS SURVEYS. RESEARCH FUNDED BY NHF IN 2022: GRANT AWARDS & FELLOWSHIPS: I. JUDITH GRAHAM POOL POSTDOCTORAL FELLOWSHIPS (JGP): - NEW JGP 2022: KENNETH CHILDERS, STRUCTURAL INVESTIGATION OF ACTIVATING FACTOR VIII AND THE INTRINSIC TENASE COMPLEX BY SINGLE PARTICLE CRYOEM, WESTERN WASHINGTON UNIVERSITYII. JEANNE MARIE LUSHER (JML) DIVERSITY RESEARCH FELLOWSHIPS 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. 2022 JML AWARD - LUISANNA SANCHEZ, CLINICAL AND MOLECULAR PROFILES ASSOCIATED WITH ROBUST AND SUSTAINED HYDROXYUREA RESPONSE FOR PATIENTS WITH SICKLE CELL DISEASE BAYLOR COLLEGE OF MEDICINE III. EXCELLENCE FELLOWSHIPSTHE 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:2022 NEW EXCELLENCE FELLOWSHIPS: - K. KLUTZ, SOCIAL WORK FELLOWSHIP, ARNOLD PALMER HOSPITAL FOR CHILDREN'S RESEARCH - RAMIREZ, PHYSICAL THERAPY FELLOWSHIP, THE UNIVERSITY OF FLORIDA- CIRALO & J. WOLF, NURSING FELLOWSHIP, WESTERN NEW YORK BLOODCARE FOUNDATION 2116650 338511 0 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 AND PROVIDES SOME TRAVEL EXPENSES SUPPORT FOR EDUCATION AND ADVOCACY MEETINGS. DEPARTMENT STAFF MEMBERS COACH CHAPTER LEADERS ON HOW TO CREATE, EXECUTE AND EVALUATE PROGRAMS AND SERVICES DESIGNED FOR THEIR AFFECTED CONSTITUENTS. IN 2022 CHAPTER SERVICES OFFERED A 16 SESSION EDUCATIONAL WEBINAR SERIES, HELD ONE NATIONAL LEADERSHIP SEMINAR OFFERING TRAINING, AND OFFERED A FULL "CHAPTER TRAINING TRACK" AT NHF'S ANNUAL BLEEDING DISORDERS CONFERENCE. THESE EDUCATION OFFERINGS FOCUSED ON DIVERSIFICATION OF FUNDING STRATEGIES, HEALTH EQUITY AND INCLUSION, BOARD DEVELOPMENT, AND BUILDING COMMUNITY OF VOLUNTEERS AND ADVOCATES. 2116650 338511 0 17113276 1 1 0 1 0 0 0 0 0 1 1 1 0 1 1 1 0 1 0 0 0 0 0 0 1 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 1 92 0 124 1 1 1 0 0 0 0 1 1 0 0 0 0 0 0 X 11 11 0 0 1 0 1 1 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AL AK AR CA CO KS FL GA HI IL KY ME MD MA MI MN MS MO NH NJ NM NY NC ND OH OK RI SC TN VA WA WV WI UT PA OR X X X PETER HARVEY 2123283700 1230 AVENUE OF THE AMERICAS 16TH FL NEW YORK NY 10020 SCOTT MARTIN CHAIR 10.00 X X 0 0 0 JOHN FARIA MBA VICE CHAIR 10.00 X X 0 0 0 RYAN GRIFFITH TREASURER 10.00 X X 0 0 0 PAULETTE BRYANT MD SECRETARY 10.00 X X 0 0 0 KAI BROWN DIRECTOR 10.00 X 0 0 0 LYNNE CAPRETTO DIRECTOR 10.00 X 0 0 0 MARIA EILEEN SAN JUAN DIRECTOR 10.00 X 0 0 0 SUSAN HARTMANN DIRECTOR 10.00 X 0 0 0 ZIVA MANN DIRECTOR 10.00 X 0 0 0 SCOTT MILLER CPA ESQ DIRECTOR 10.00 X 0 0 0 DERICK STACE-NAUGHTON DIRECTOR 10.00 X 0 0 0 LEONARD VALENTINO PRESIDENT & CEO 40.00 X 452363 0 55150 PETER HARVEY CHIEF BUSINESS OFFICER 40.00 X 211498 0 68831 KEVIN MILLS CHIEF SCIENTIFIC OFFICER THRU 12/1/22 40.00 X 367891 0 38905 SANDRA D ROTELLINI CHIEF OPERATING OFFICER 40.00 X 212680 0 48109 BRETT SPITALE V.P. OF ADVANCEMENT 40.00 X 184580 0 79270 MICHELLE WITKOP V.P. OF RESEARCH 40.00 X 189139 0 61388 NEIL FRICK S.V.P. OF RESEARCH & MEDIC 40.00 X 193036 0 45419 KERRI NORRIS VP OF HEALTH EQUITY DIVERSITY AND INCLUSION 40.00 X 175562 0 40108 ANNA SPROVSKAYA CONTROLLER 40.00 X 169716 0 42427 MICHELLE RICE FORMER CHIEF EXTERNAL AFFAIR OFFICER 0.00 X 208692 0 2562 2365157 0 482169 25 1 1 0 IMPACT EDUCATION LLC 589 SKIPPACK PIKE SUITE 200 BLUE BELL PA 19422 CONSULTANT FOR MEDICAL EDUCATION 813070 MANIFEST LLC 4110 N SCOTTSDALE ROAD SUITE 315 SCOTTSDALE AZ 85251 PRODUCTION/HEMAWARE PUBLICATION 416953 RESERVOIR COMMUNICATIONS GROUP 607 14TH STREET WASHINGTON DC 20005 COPAY ACCUMULATOR SERVICES 272810 ARTEMIS POLICY GROUP LLC 1150 CONNECTICUT AVE NW STE 803 WASHINGTON DC 20036 STRATEGIC ADVISORY SERVICES 216000 MERZ 12 SOUTH MONROE STREET MEDIA PA 19063 REBRANDING SERVICES 215767 12 20656 340461 1988393 14313743 8281 16663253 EDUCATIONAL/MEDICAL LITERATURE 541800 1000348 1000348 EDUCATION SEMINARS 611710 221293 221293 1221641 402236 402236 38478 39897 -1419 -1419 -1419 31423 340461 182025 -150602 -150602 MISCELLANEOUS 611710 15059 15059 15059 18150168 221293 1000348 265274 X 1179659 1179659 202124 202124 1455427 768776 686651 211254 211254 7243553 5237464 1355099 650990 530219 370230 124802 35187 1337390 907966 295884 133540 628446 414197 156125 58124 44063 44063 53000 53000 198000 198000 45242 45242 3333704 2956521 340525 36658 18730 16855 1689 186 330020 241646 66839 21535 332607 262635 56238 13734 763186 482764 227884 52538 1898393 1563193 183335 151865 864795 785174 53707 25914 48439 31796 12410 4233 66378 46538 14801 5039 UBIT 49796 45089 458 4249 MEMBERSHIP DUES 692726 471181 113480 108065 STATIONERY AND PRINTING 611104 555262 5646 50196 LEGAL SETTLEMENT 500000 500000 427530 376206 36593 14731 23065785 17113276 4585725 1366784 6865185 4805329 11559242 7633215 1312734 1180789 495478 466345 524314 432741 140012 91573 25542462 21276255 870955 2365840 46786068 37819346 1994944 2385753 1465500 1545750 13478 246582 2451182 2257544 5925104 6435629 X 27539604 21244814 13321360 10138903 40860964 31383717 46786068 37819346 -4915617 -4561630 0 X X 0 1 X 1 0 X 21279313 26168507 19810154 22875439 16663253 106796666 21279313 26168507 19810154 22875439 16663253 106796666 52456867 54339799 660487 775199 730271 770403 402236 3338596 110340 105704 306003 342256 864303 78887 148386 26071 1408 15059 269811 111269376 1083965 0.48840 0.48070 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 1 16181 0 0 1 222903 1 0 239084 0 PART II-B, LINE 1: THE PUBLIC POLICY DEPARTMENT WORKS TO ESTABLISH AND ADVOCATE FOR POLICIES THAT PROMOTE THE HEALTH, SAFETY, RIGHTS AND ACCESS TO CARE FOR PERSONS WITH BLEEDING DISORDERS BY WORKING WITH FEDERAL AND STATE LAWMAKERS, OTHER GOVERNMENT AGENCIES AND OFFICIALS, THE MEDIA, INDUSTRY AND ALLIED ORGANIZATIONS. TWO KEY INITIATIVES OF THE DEPARTMENT ARE THE NATIONAL ADVOCACY EMPOWERMENT PROGRAM (NAEP) AND WASHINGTON DAYS. THE NAEP PROVIDES TRAINING, TOOLS AND SUPPORT TO ASSIST CONSUMERS IN BECOMING EFFECTIVE ADVOCATES AT THE STATE & FEDERAL LEVELS. WASHINGTON DAYS IS NHF'S ANNUAL GRASSROOTS EVENT WHICH BROUGHT PATIENTS TO DC TO MEET WITH MEMBERS OF CONGRESS. 2146385 -361074 0 1785311 1983771 211918 49304 2146385 1795609 203554 15392 1983771 1601942 2426 205715 14474 1795609 1755256 4829 -144532 13611 1601942 0.84019 0.15981 0 0 51576 38320 13256 472738 394421 78317 91573 MUTUAL FUNDS-FIXED INCOME 8888627 F MUTUAL FUNDS-EQUITY-U.S. MUTUAL 7485730 F FUNDS-EQUITY-INTERNATIONAL 4901898 F 21276255 INVESTMENTS IN DEFERRED COMPENSATION 351775 SECURITY DEPOSITS 275709 RIGHT-OF-USE ASSETS 1738356 2365840 DEFERRED PENSION LIABILITY 351775 OPERATING LEASE LIABILITIES 1905769 2257544 X 13725321 -4561630 182025 -4379605 18104926 45242 45242 18150168 23202568 182025 182025 23020543 45242 45242 23065785 PART V, LINE 4: TO PROVIDE FUNDING FOR RESEARCH FELLOWSHIP GRANTS. THE FOUNDATION HAS DECIDED TO APPROPRIATE FUNDS ON AN ANNUAL BASIS FOR EXPENDITURE AT THE RATE UP TO 4% OF THE FUND'S AVERAGE FAIR MARKET VALUE OVER THE MOST RECENT 36-MONTH PERIOD TAKING INTO CONSIDERATION RELEVANT ECONOMIC, INVESTMENT, AND FINANCIAL CONDITIONS. NET AMOUNTS AVAILABLE FOR RELEASE ACCUMULATED FROM PREVIOUS YEARS TOTAL $285,311 AND $646,385 AS OF DECEMBER 31, 2022 AND 2021, RESPECTIVELY, AND ARE RECORDED AS DONOR RESTRICTED NET ASSETS UNTIL DESIGNATED AS RESEARCH AWARDS. PART X, LINE 2: THE FOUNDATION RECOGNIZES THE EFFECT OF INCOME TAX POSITIONS ONLY IF THOSE POSITIONS ARE MORE LIKELY THAN NOT OF BEING SUSTAINED. MANAGEMENT HAS DETERMINED THAT THE FOUNDATION HAD NO UNCERTAIN TAX POSITIONS THAT WOULD REQUIRE FINANCIAL STATEMENT RECOGNITION OR DISCLOSURE. THE ORGANIZATION IS NO LONGER SUBJECT TO EXAMINATIONS BY THE APPLICABLE TAXING JURISDICTIONS FOR TAX YEARS PRIOR TO 2019. PART XI, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE NETTED AGAINST REVENUE 182,025. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE NETTED AGAINST REVENUE 182,025. WALKS 192113 192113 604 3999 4183 741 43852 RED TIE SOIREE 133488 113388 20100 603 70489 212 38662 4 46283 34960 11323 2123 500 8777 600 6680 371884 340461 31423 3330 74988 13172 1341 89194 182025 -150602 1 THE CHILDREN'S HOSPITAL OF PHILADELPHIA PO BOX 8500 PHILADELPHIA PA 19178 231352166 501(C)(3) 200000 0 NHF-TAKEDA CLINICAL FELLOWSHIP UNIVERSITY OF WASHINGTON 12455 COLLECTIONS DRIVE CHICAGO IL 60693 916001537 501(C)(3) 200000 0 NHF-TAKEDA CLINICAL FELLOWSHIP BAYLOR COLLEGE OF MEDICINE PO BOX 301207 DALLAS TX 75303 741613878 501(C)(3) 156000 0 RESEARCH JEANNE MARIE LUSHER DIVERSITY FELLOWSHIP WESTERN WASHINGTON UNIVERSITY 516 HIGH STREET BELLINGHAM WA 98225 916073519 501(C)(3) 104000 0 RESEARCH JUDITH GRAHAM POOL AWARD NEW ENGLAND HEMOPHILIA ASSOCIATION 347 WASHINGTON STREET SUITE 402 DEDHAM MA 02026 046111861 501(C)(3) 30500 0 CHAPTER CAPACITY BUILDING GRANT, UNITE WALK AND STATE BASED COALITION GRANTS BLEEDING DISORDER ASSOCIATION OF SC 25 WOODS LAKE ROAD SUITE 300 GREENVILLE SC 29607 237400632 501(C)(3) 30000 0 STATE BASED ADVOCACY COALITION & CHAPTER CAPACITY GRANTS ASOCIACIN PUERTORRIQUEA DE HEMOFILIA PMB 633 PO BOX 29005 00929-0005 SAN JUAN PR 00929 660559280 501(C)(3) 28000 0 CHAPTER CAPACITY BUILDING GRANT BLEEDING DISORDERS ASSN OF NE NEW YORK 333 BROADWAY SUITE 320 TROY NY 12180 222519156 501(C)(3) 27875 0 STATE BASED ADVOCACY COALITION & CHAPTER CAPACITY GRANTS WESTERN PENNSYLVANIA BLEEDING DISORDERS 775 FOURTH STREET 1ST FLOOR BEAVER PA 15009 251359331 501(C)(3) 27470 0 STATE BASED ADVOCACY COALITION & CHAPTER CAPACITY GRANTS HEMOPHILIA FOUNDATION OF MICHIGAN 1921 WEST MICHIGAN AVENUE YPSILANTI MI 48197 381905673 501(C)(3) 23000 0 CHAPTER CAPACITY BUILDING & UNITE WALK GRANTS BLEEDING DISORDERS ALLIANCE ILLINOIS 210 SOUTH DESPLAINES STREET CHICAGO IL 60661 362390156 501(C)(3) 19913 0 STATE BASED ADVOCACY COALITION & CHAPTER CAPACITY GRANTS VIRGINIA HEMOPHILIA FOUNDATION 9702 GAYTON ROAD SUITE 277 RICHMOND VA 23238 541183181 501(C)(3) 19000 0 CHAPTER CAPACITY BUILDING & UNITE WALK GRANTS UNIVERSITY OF FLORIDA PO BOX 113001 GAINESVILLE FL 32611 596002052 501(C)(3) 15000 0 PHYSICAL THERAPY EXCELLENCE FELLOWSHIP AWARD WESTERN NEW YORK BLOODCARE FOUNDATION 1010 MAIN STREET SUITE 300 BUFFALO NY 14202 464703683 501(C)(3) 15000 0 NURSING EXCELLENCE FELLOWSHIP AWARD ORLANDO HEALTH ARNOLD PALMER HOSPITAL FOR CHILDREN 92 WEST MILLER STREET ORLANDO FL 32806 591726273 501(C)(3) 15000 0 SOCIAL WORKER EXCELLENCE FELLOWSHIP AWARD LOUISIANA HEMOPHILIA FOUNDATION 3084 WESTFORK DRIVE A BATON ROUGE LA 70816 510207472 501(C)(3) 15000 0 CHAPTER CAPACITY BUILDING GRANT HEMOPHILIA FOUNDATION OF SCALIFORNIA 959 EAST WALNUT STREET 114 PASADENA CA 91106 951916053 501(C)(3) 13000 0 CHAPTER CAPACITY BUILDING & UNITE WALK GRANTS HEMOPHILIA ASSOC OF SAN DIEGO COUNTY 3550 CAMINO DEL RIO NORTH 105 SAN DIEGO CA 92108 237252243 501(C)(3) 13000 0 CHAPTER CAPACITY BUILDING & UNITE WALK GRANTS GREAT LAKES HEMOPHILIA FOUNDATION 638 NORTH 18TH STREET SUITE 108 MILWAUKEE WI 53233 237367636 501(C)(3) 12000 0 STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS HEMOPHILIA COUNCIL OF CALIFORNIA 717 K STREET 501 SACRAMENTO CA 95814 680182998 501(C)(3) 12000 0 STATE BASED ADVOCACY COALITION GRANT TEXAS CENTRAL BLEEDING DISORDERS 12700 HILLCREST ROAD 191 DALLAS TX 75230 751187148 501(C)(3) 11000 0 STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS PACIFIC NORTHWEST BLEEDING DISORDERS 456 SOUTHWEST MONROE AVENUE CORVALLIS OR 97333 930551733 501(C)(3) 10000 0 STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS HEMOPHILIA ASSN OF THE CAPITAL AREA 6412 BRANDON AVENUE SPRINGFIELD VA 22150 541702561 501(C)(3) 10000 0 CHAPTER CAPACITY BUILDING GRANT CENTRAL CALIFORNIA HEMOPHILIA FDN PO BOX 163689 SACRAMENTO CA 95816 237373643 501(C)(3) 8000 0 CHAPTER CAPACITY BUILDING & UNITE WALK GRANTS NORTHERN OHIO HEMOPHILIA FOUNDATION 17407 LORAIN AVENUE 206 CLEVELAND OH 44111 341018501 501(C)(3) 8000 0 UNITE WALK GRANT OKLAHOMA HEMOPHILIA FOUNDATION 9524 EAST 81ST STREET SUITE B1510 TULSA OK 74133 730754621 501(C)(3) 8000 0 STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS BLEEDING DISORDERS FOUNDATION OF NC 260 TOWN HALL DRIVE A MORRISVILLE NC 27560 561273974 501(C)(3) 7500 0 STATE BASED ADVOCACY COALITION GRANT 27 0 CHAPTERS EMERGENCY FINANCIAL ASSISTANCE TO FAMILIES WITH BLEEDING DISORDERS 582 93582 SCHOLARSHIP AWARD 4 6500 TRAVEL GRANTS TO ANNUAL CONFERENCE 162 102042 PART I, LINE 2: BASED ON THE NHF REQUIREMENTS, ALL CHAPTERS THAT WERE AWARDED GRANTS PROVIDE QUARTERLY PROGRAM AND FINANCIAL REPORTS REGARDING THEIR GRANTS WITH NHF. ONLY AFTER SUBMISSION OF A QUARTERLY PROGRAM REPORT DESCRIBING THEIR PROGRESS IN COMPLETING DELINEATED TASKS AND COMPLETE FINANCIAL REPORTING NHF WILL RELEASE THE NEXT QUARTERLY PAYMENT FOR THE GRANT RECIPIENTS. THE FINAL PAYMENT IS HELD UNTIL A FULL FINAL SUMMARY REPORT IS HANDED IN, ALL TASKS HAVE BEEN ADDRESSED AND FINANCIAL STATEMENTS RECONCILED (GRANTS TO CHAPTERS). ALL GRANTEES FOR THE RESEARCH PROGRAMS MUST SUBMIT FINANCIAL REPORTS FROM THEIR INSTITUTION STATING THE PAYMENTS HAVE BEEN RECEIVED AND APPROPRIATE EXPENSES INCURRED. DEPENDING UPON THE AWARD, THESE REPORTS ARE EITHER DUE ON A SEMI-ANNUAL OR ANNUAL BASIS. SUBSEQUENT PAYMENTS AND DECISIONS REGARDING CONTINUATION OF MULTI-YEAR GRANTS ARE DEPENDENT UPON ANNUAL RECEIPT, REVIEW AND APPROVAL OF BUDGETS, FINANCIAL REPORTS, CONTINUATION APPLICATIONS AND SCIENTIFIC PROGRESS REPORTS. AS A CONDITION OF THEIR AWARD, ALL GRANTEES SIGN AN AGREEMENT WITH NHF TO ABIDE BY OUR ORGANIZATION'S GRANT POLICIES AND PROCEDURES, WHICH ALSO INCLUDES A DESCRIPTION OF AUTHORIZED AND UNAUTHORIZED EXPENSES. X X X X 1 0 0 0 0 0 0 1 0 LEONARD VALENTINO PRESIDENT & CEO 363726 0 85865 0 2772 0 28075 0 27075 0 507513 0 0 0 KEVIN MILLS CHIEF SCIENTIFIC OFFICER THRU 12/1/22 318085 0 0 0 49806 0 11831 0 27074 0 406796 0 0 0 PETER HARVEY CHIEF BUSINESS OFFICER 207726 0 1000 0 2772 0 15384 0 53447 0 280329 0 0 0 BRETT SPITALE V.P. OF ADVANCEMENT 182950 0 1000 0 630 0 25824 0 53446 0 263850 0 0 0 SANDRA D ROTELLINI CHIEF OPERATING OFFICER 209874 0 1000 0 1806 0 29103 0 19006 0 260789 0 0 0 MICHELLE WITKOP V.P. OF RESEARCH 183544 0 1000 0 4595 0 24568 0 36820 0 250527 0 0 0 NEIL FRICK S.V.P. OF RESEARCH & MEDIC 190746 0 1000 0 1290 0 26413 0 19006 0 238455 0 0 0 KERRI NORRIS VP OF HEALTH EQUITY DIVERSITY AND INCLUSION 173932 0 1000 0 630 0 8180 0 31928 0 215670 0 0 0 ANNA SPROVSKAYA CONTROLLER 166244 0 1000 0 2472 0 23422 0 19005 0 212143 0 0 0 MICHELLE RICE FORMER CHIEF EXTERNAL AFFAIR OFFICER 7543 0 0 0 201149 0 1090 0 1472 0 211254 0 201080 0 PART I, LINE 4A THE ORGANIZATION'S FORMER CHIEF EXTERNAL AFFAIR OFFICER AND CHIEF SCIENTIFIC OFFICER RECEIVED SEVERANCE PAYMENTS DURING THE FISCAL YEAR ENDING 2022, IN THE AMOUNTS OF $201,080 AND $48,877 RESPECTIVELY. PART I, LINE 7 THE FORM AND AMOUNT OF ANY PERFORMANCE BONUSES SHALL BE WITHIN THE BOARD'S DISCRETION. THE BONUS DETERMINATION WILL BE MADE PURSUANT TO A FORMALIZED REVIEW PROCESS CONDUCTED BY THE BOARD OF DIRECTORS. FORM 990, PART VI, SECTION A, LINE 4 ON AUGUST 17, 2023, THE ORGANIZATION UPDATED ITS GOVERNING DOCUMENTS, CHANGING ITS NAME TO THE NATIONAL BLEEDING DISORDERS FOUNDATION. FORM 990, PART VI, SECTION A, LINE 6 THE ORGANIZATION HAS CHAPTER MEMBERS WHO ARE VOTING MEMBERS OF THE ORGANIZATION. AN ORGANIZATION WHOSE MISSION AND PURPOSE IS CONSISTENT WITH THE MISSION OF NHF MAY APPLY TO BE A CHAPTER MEMBER. THE ORGANIZATION MUST MEET CERTAIN STANDARDS IN ORDER TO BE APPROVED AS A CHAPTER. THE CEO IS AUTHORIZED TO ACCEPT OR DENY CHAPTER MEMBER STATUS. FORM 990, PART VI, SECTION A, LINE 7A CHAPTER MEMBERS ARE ENTITLED TO VOTE FOR DIRECTORS FOR EACH OF THE VACANCIES TO BE FILLED DURING ELECTIONS. FORM 990, PART VI, SECTION B, LINE 11B A COPY OF FORM 990 IS CIRCULATED ELECTRONICALLY TO THE ORGANIZATION'S BOARD MEMBERS. THE FULL BOARD WILL HAVE THE OPPORTUNITY TO HAVE THE FORM 990 PRESENTED TO THEM BY THE AUDITOR BY CONFERENCE CALL PRIOR TO BEING SUBMITTED. THE CEO, CBO, COO AND CONTROLLER ARE ALSO PRESENT ON THE CALL. FORM 990, PART VI, SECTION B, LINE 12C ALL EMPLOYEES, OFFICERS AND DIRECTORS MUST COMPLETE A CONFLICT OF INTEREST FORM STATING THAT THEY HAVE NO CONFLICT OF INTEREST OR IF THEY DO, THEY MUST DISCLOSE SUCH CONFLICT ON THIS FORM. THIS FORM MUST BE COMPLETED AT THE TIME OF HIRE AND EVERY YEAR THEREAFTER. FOR MATTERS CONCERNING CONFLICTS OF INTEREST BY A VOTING MEMBER OF THE BOARD, THE MEMBER WILL BE PROHIBITED FROM PARTICIPATING IN DELIBERATIONS AND DECISIONS CONCERNING ITEMS THAT GIVE RISE TO SUCH CONFLICTS. IN THE EVENT A CONFLICT OF INTEREST IS DISCLOSED, THE MATTER WILL BE REVIEWED BY THE CEO, CBO AND COO. THE CEO, CBO AND COO MAY DECIDE TO PERMIT EXCEPTIONS TO THIS POLICY IF IT IS DETERMINED, IN GOOD FAITH, THAT SUCH PROPOSED CONTRACT OR TRANSACTION IS ON TERMS WHICH ARE MATERIALLY ADVANTAGEOUS TO NHF OR THE EMPLOYEE INVOLVED WILL PROVIDE A UNIQUE SERVICE TO NHF ON TERMS WHICH ARE FAIR AND REASONABLE TO NHF. FORM 990, PART VI, SECTION B, LINE 15 THE BOARD OF DIRECTORS SETS THE COMPENSATION OF CEO AT HIRE AND THEREAFTER USES AN INDEPENDENT CONSULTANT'S ANALYSIS OF COMPARABLE SALARY SURVEYS (BIANNUALLY). THE CEO SETS COMPENSATION FOR KEY EMPLOYEES WITHIN A DESIGNATED SALARY RANGE IN ALIGNMENT WITH A STRUCTURE THAT INCORPORATES A COMPREHENSIVE SALARY ANALYSIS PROVIDED BY A COMPENSATION CONSULTING COMPANY AS WELL AS INPUT FROM COO/HR. THIS WAS LAST UNDERTAKEN IN 2020. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION MAKES ITS FORM 990, FINANCIAL STATEMENTS, ARTICLES OF INCORPORATION, CONFLICTS OF INTEREST, FORM 1023, AND BY-LAWS AVAILABLE ON THE ORGANIZATION'S WEBSITE AT WWW.HEMOPHILIA.ORG OR UPON WRITTEN REQUEST OR BY CALLING THE ORGANIZATION DIRECTLY. FORM 990, PART IX, LINE 11G EMPLOYMENT RECRUITING: PROGRAM SERVICE EXPENSES 318. MANAGEMENT AND GENERAL EXPENSES 17,065. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 17,383. CONSULTING: PROGRAM SERVICE EXPENSES 1,329,791. MANAGEMENT AND GENERAL EXPENSES 153,068. FUNDRAISING EXPENSES 16,894. TOTAL EXPENSES 1,499,753. OTHER PROFESSIONAL FEES: PROGRAM SERVICE EXPENSES 1,607,300. MANAGEMENT AND GENERAL EXPENSES 161,018. FUNDRAISING EXPENSES 7,010. TOTAL EXPENSES 1,775,328. PAYROLL PROCESSING FEES: PROGRAM SERVICE EXPENSES 19,112. MANAGEMENT AND GENERAL EXPENSES 9,374. FUNDRAISING EXPENSES 12,754. TOTAL EXPENSES 41,240. FORM 990, PART XII, LINE 2C: THE ORGANIZATION HAS A COMMITTEE THAT ASSUMES RESPONSIBILITY FOR OVERSIGHT OF THE AUDIT OF ITS FINANCIAL STATEMENTS AND SELECTION OF THE INDEPENDENT ACCOUNTANT. THIS PROCESS IS UNCHANGED FROM THE PRIOR YEAR. NATIONAL HEMOPHILIA FOUNDATION VENTURE FUND LLC 8 THE GREEN SUITE B DOVER DE 19901 SEE SCHEDULE R, PART VII SUPPLEMENTAL INFORMATION DE 1047 2501047 NATIONAL HEMOPHILIA FOUNDATION SCHEDULE R, PART I, PRIMARY ACTIVITY TO ACCELERATE RESEARCH AND DEVELOPMENT FOR THE CURE, PREVENTION, AND TREATMENT OF INHERITABLE BLOOD DISORDERS.