2024-10-10T12:08:58-05:00 2023-12-31 873231666 PKF O'CONNOR DAVIES ADVISORY LLC 20 COMMERCE DRIVE SUITE 301 CRANFORD NJ 070163618 990 2023-01-01 135641857 NATIONAL BLEEDING DISORDERS FOUNDATION NATI 2123283700 1230 AVENUE OF THE AMERICAS 16TH F NEW YORK NY 10020 PETER HARVEY CHIEF BUSINESS OFFICER 2123283700 2024-11-15 1 1 GARRETT M HIGGINS P00543209 9082726200 2024-10-01 2023 2024-10-15 13:58:12Z PETER HARVEY 1230 AVENUE OF THE AMERICAS 16TH FL NEW YORK NY 10020 21040764 0 X WWW.BLEEDING.ORG X 1948 NY THE NATIONAL BLEEDING DISORDERS FOUNDATION (FORMERLY THE NATIONAL HEMOPHILIA FOUNDATION) IS DEDICATED TO FINDING CURES FOR INHERITABLE BLOOD AND BLEEDING DISORDERS AND TO ADDRESSING AND PREVENTING THE COMPLICATIONS OF THESE DISORDERS THROUGH RESEARCH, EDUCATION, AND ADVOCACY ENABLING PEOPLE AND FAMILIES TO THRIVE. 13 13 117 1010 966086 128822 16663253 16322358 1221641 1337404 400817 1005490 -135543 382596 18150168 19047848 1381783 777540 0 0 11406289 11576381 0 0 1519083 10277713 10726427 23065785 23080348 -4915617 -4032500 37819346 33488551 6435629 3788578 31383717 29699973 X THE NATIONAL BLEEDING DISORDERS FOUNDATION (FORMERLY THE NATIONAL HEMOPHILIA FOUNDATION) IS DEDICATED TO FINDING CURES FOR INHERITABLE BLOOD AND BLEEDING DISORDERS AND TO ADDRESSING AND PREVENTING THE COMPLICATIONS OF THESE DISORDERS THROUGH RESEARCH, EDUCATION, AND ADVOCACY ENABLING PEOPLE AND FAMILIES TO THRIVE. 0 0 5957443 145478 371318 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) 5512265 215301 0 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. 4230915 277081 0 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. 1868116 139680 0 CHAPTER SERVICES NBDF'S CHAPTER SERVICES DEPARTMENT PROVIDES COMMUNITY SUPPORT BY HELPING ITS 51 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 2023, CHAPTER SERVICES OFFERED 23 SESSION EDUCATIONAL WEBINAR SERIES, HELD ONE NATIONAL LEADERSHIP SEMINAR OFFERING TRAINING, AND OFFERED A FULL "CHAPTER TRAINING TRACK" AT NBDF'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. ADDITIONALLY, THE UNITE FOR BLEEDING DISORDERS WALK (PEER-TO-PEER FUNDRAISING CAMPAIGN) EMPOWERED 5,890 PARTICIPANTS TO RAISE A COLLECTIVE $2.2M FOR THEIR LOCAL CHAPTERS. 1868116 139680 0 17568739 1 1 0 1 0 0 0 0 0 1 1 1 0 0 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 1 109 0 117 1 1 1 0 0 0 0 1 1 0 0 0 0 0 0 X 13 13 0 0 0 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 RYAN GRIFFITH TREASURER 10.00 X X 0 0 0 PAULETTE BRYANT MD SECRETARY 10.00 X X 0 0 0 JOSEPH ALIOTO MD DIRECTOR 10.00 X 0 0 0 KAI BROWN DIRECTOR - THRU 5/18/23 5.00 X 0 0 0 JAMES R CHRISTENSEN 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 JOSEPH J HELFERT II DIRECTOR 10.00 X 0 0 0 PETER A KOUIDES MD 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 LISA R PITLER DIRECTOR 10.00 X 0 0 0 DERICK STACE-NAUGHTON DIRECTOR 10.00 X 0 0 0 LEONARD VALENTINO PRESIDENT & CEO 40.00 X 361900 0 57663 PETER HARVEY CHIEF BUSINESS OFFICER 40.00 X 208679 0 68827 MICHAEL RECHT CHIEF SCIENTIFIC OFFICER 40.00 X 290230 0 222 SANDRA D ROTELLINI CHIEF OPERATING OFFICER 40.00 X 210612 0 57336 TERI WILLEY MANAGING DIRECTOR 40.00 X 309094 0 39728 BRETT SPITALE V.P. 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OF RESEARCH & MEDIC 40.00 X 192468 0 44995 KERRI NORRIS VP OF HEALTH EQUITY DIVERSITY AND INCLUSION 40.00 X 172451 0 42860 RENEE PECK SENIOR DEVELOPMENT DIRECTOR 40.00 X 197970 0 303 2124628 0 388297 26 0 1 0 IMPACT EDUCATION LLC 589 SKIPPACK PIKE SUITE 200 BLUE BELL PA 19422 CONSULTANT FOR MEDICAL EDUCATION 738384 MANIFEST LLC 4110 N SCOTTSDALE ROAD SUITE 315 SCOTTSDALE AZ 85251 PRODUCTION/HEMAWARE PUBLICATION 585517 MERZ 12 SOUTH MONROE STREET MEDIA PA 19063 REBRANDING SERVICES 328217 IQVIA OUTCOME SCIENCE LLC 4820 EMPEROR BOULEVARD DURHAM NC 27703 TECHNOLOGY AND CONSULTING SERVICES 300000 ARTEMIS POLICY GROUP LLC 1150 CONNECTICUT AVE NW STE 803 WASHINGTON DC 20036 STRATEGIC ADVISORY SERVICES 204978 14 17133 415829 528320 15361076 16322358 EDUCATIONAL/MEDICAL LITERATURE 541800 966086 966086 EDUCATION SEMINARS 611710 371318 371318 1337404 694613 694613 2138647 1827770 310877 310877 310877 34414 415829 165146 -130732 -130732 INSURANCE SETTLEMENT 524298 500000 500000 CREDIT CARD REBATE 900099 13328 13328 513328 19047848 371318 966086 1388086 X 621936 621936 155604 155604 1255469 595926 659543 7727353 5501148 1410651 815554 525822 368210 118412 39200 1430498 974931 266901 188666 637239 419602 138023 79614 82603 82603 54000 54000 200000 200000 56605 56605 3859361 3456091 388331 14939 11243 10072 1089 82 271626 196692 55430 19504 517673 410420 78350 28903 932988 626283 223442 83263 1960009 1673952 148645 137412 933959 870687 63272 50232 34901 10299 5032 84577 58301 13759 12517 UBIT 96891 96891 STATIONERY AND PRINTING 718157 699764 426 17967 MEMBERSHIP DUES 547759 383532 91148 73079 PROGRAM SUPPLIES 287817 280855 6962 60927 29832 27744 3351 23080348 17568739 3992526 1519083 4805329 7217991 7633215 520560 1180789 1474349 466345 484222 109328 68330 91573 40998 21276255 22412096 0 806849 2365840 531486 37819346 33488551 2385753 2147290 1545750 899697 246582 219085 2257544 522506 6435629 3788578 X 21244814 20009403 10138903 9690570 31383717 29699973 37819346 33488551 -4032500 2348756 0 X X 0 1 X 1 0 X 26168507 19810154 22875439 16663253 16322358 101839711 26168507 19810154 22875439 16663253 16322358 101839711 53009915 48829796 775199 730271 770403 402236 694613 3372722 105704 306003 342256 128822 882785 148386 26071 1408 15059 513328 704252 106799470 1030191 0.45720 0.48840 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 1 12811 0 0 1 226996 1 26895 0 266702 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 NBDF'S ANNUAL GRASSROOTS EVENT WHICH PROVIDED OPPORTUNITIES FOR PATIENTS TO CONNECT WITH MEMBERS OF CONGRESS. 1785311 131258 1916569 2146385 -361074 1785311 1983771 211918 49304 2146385 1795609 203554 15392 1983771 1601942 2426 205715 14474 1795609 0.78265 0.21735 0 0 109328 68330 40998 40998 MUTUAL FUNDS-FIXED INCOME 8873786 F MUTUAL FUNDS-EQUITY-U.S. MUTUAL 8119347 F FUNDS-EQUITY-INTERNATIONAL 5418963 F 22412096 DEFERRED PENSION LIABILITY 470050 OPERATING LEASE LIABILITIES 52456 522506 X 21505145 2348756 165146 2513902 18991243 56605 56605 19047848 23188889 165146 165146 23023743 56605 56605 23080348 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 $416,569 AND $285,311 AS OF DECEMBER 31, 2023 AND 2022, 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 2020. PART XI, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE NETTED AGAINST REVENUE 165,146. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE NETTED AGAINST REVENUE 165,146. RED TIE SOIREE 202455 181305 21150 554 14280 46868 3500 35898 WALKS 178847 178847 670 8059 1767 1105 22507 5 68941 55677 13264 2078 14875 6781 6204 450243 415829 34414 3302 37214 55416 4605 64609 165146 -130732 1 UNIVERSITY OF PITTSBURGH 3420 FORBES AVENUE PITTSBURGH PA 15260 250965591 501(C)(3) 104000 0 RESEARCH JUDITH GRAHAM POOL AWARD EMORY UNIVERSITY 1599 CLIFTON ROAD NORTHEAST 4TH FLOOR ATLANTA GA 30322 580566256 501(C)(3) 99421 0 RESEARCH JUDITH GRAHAM POOL AWARD BRIGHAM AND WOMEN'S HOSPITAL 75 FRANCIS STREET BOSTON MA 02115 042312909 501(C)(3) 70000 0 CAREER DEVELOPMENT AWARD WAYNE STATE UNIVERSITY 5057 WOODWARD AVENUE 13TH FLOOR DETROIT MI 48202 386028429 501(C)(3) 30000 0 SOCIAL WORKER EXCELLENCE FELLOWSHIP AWARD WESTERN PENNSYLVANIA BLEEDING DISORDERS 775 FOURTH STREET 1ST FLOOR BEAVER PA 15009 251359331 501(C)(3) 18100 0 STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS THE FEINSTEIN INSTITUTES FOR MEDICAL RESEARCH PO BOX 95000-7530 PHILADELPHIA PA 19195 112673595 501(C)(3) 15000 0 NURSING EXCELLENCE FELLOWSHIP AWARD WVU FOUNDATION 64 MEDICAL CENTER DRIVE MORGANTOWN WV 26506 556017181 501(C)(3) 14452 0 SUMMER CAMP PROGRAM GREAT LAKES HEMOPHILIA FOUNDATION 638 NORTH 18TH STREET SUITE 108 MILWAUKEE WI 53233 237367636 501(C)(3) 13350 0 STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS BLEEDING DISORDER ASSOCIATION OF SC 25 WOODS LAKE ROAD SUITE 300 GREENVILLE SC 29607 237400632 501(C)(3) 13100 0 STATE BASED ADVOCACY COALITION & CHAPTER CAPACITY GRANTS PACIFIC NORTHWEST BLEEDING DISORDERS 456 SOUTHWEST MONROE AVENUE CORVALLIS OR 97333 930551733 501(C)(3) 13100 0 STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS TEXAS CENTRAL BLEEDING DISORDERS 12700 HILLCREST ROAD 191 DALLAS TX 75230 751187148 501(C)(3) 13100 0 STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS HEMOPHILIA FOUNDATION OF MICHIGAN 1921 WEST MICHIGAN AVENUE YPSILANTI MI 48197 381905673 501(C)(3) 13000 0 CHAPTER CAPACITY BUILDING & UNITE WALK GRANTS ASOCIACION PUERTORRIQUENA DE HEMOFILIA PMB 633 PO BOX 29005 00929-0005 SAN JUAN PR 00929 660559280 501(C)(3) 12350 0 STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS VIRGINIA HEMOPHILIA FOUNDATION 9702 GAYTON ROAD SUITE 277 RICHMOND VA 23238 541183181 501(C)(3) 11100 0 CHAPTER CAPACITY BUILDING & UNITE WALK GRANTS BLEEDING DISORDERS FOUNDATION OF NC 260 TOWN HALL DRIVE A MORRISVILLE NC 27560 561273974 501(C)(3) 11100 0 STATE BASED ADVOCACY COALITION GRANT HEMOPHILIA COUNCIL OF CALIFORNIA 717 K STREET 501 SACRAMENTO CA 95814 680182998 501(C)(3) 10000 0 STATE BASED ADVOCACY COALITION GRANT NORTHERN OHIO HEMOPHILIA FOUNDATION 17407 LORAIN AVENUE 206 CLEVELAND OH 44111 341018501 501(C)(3) 9350 0 UNITE WALK GRANT NEW ENGLAND HEMOPHILIA ASSOCIATION 347 WASHINGTON STREET SUITE 402 DEDHAM MA 02026 046111861 501(C)(3) 7850 0 STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS BLEEDING DISORDERS ALLIANCE ILLINOIS 210 SOUTH DESPLAINES STREET CHICAGO IL 60661 362390156 501(C)(3) 6850 0 STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS HEMOPHILIA FOUNDATION OF S CALIFORNIA 959 EAST WALNUT STREET 114 PASADENA CA 91106 951916053 501(C)(3) 6850 0 CHAPTER CAPACITY BUILDING & UNITE WALK GRANTS HEMOPHILIA FOUNDATION OF N CALIFORNIA 1155-C ARNOLD DRIVE 236 MARTINEZ CA 94553 941638703 501(C)(3) 6600 0 CHAPTER CAPACITY BUILDING & UNITE WALK GRANTS BLEEDING DISORDER ALLIANCE OF N DAKOTA PO BOX 548 FARGO ND 58107 471684681 501(C)(3) 5600 0 CHAPTER CAPACITY BUILDING & UNITE WALK GRANTS BLEEDING DISORDERS OF THE HEARTLAND PO BOX 36568 DES MOINES IA 50315 421334948 501(C)(3) 5350 0 CHAPTER CAPACITY BUILDING & UNITE WALK GRANTS LOUISIANA HEMOPHILIA FOUNDATION 3084 WESTFORK DRIVE A BATON ROUGE LA 70816 510207472 501(C)(3) 5100 0 STATE BASED ADVOCACY COALITION GRANT 24 0 CHAPTERS EMERGENCY FINANCIAL ASSISTANCE TO FAMILIES WITH BLEEDING DISORDERS 175 25856 SCHOLARSHIP AWARD 1 1000 TRAVEL GRANTS TO ANNUAL CONFERENCE 145 128748 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 0 0 0 0 0 0 0 1 0 LEONARD VALENTINO PRESIDENT & CEO 358289 0 0 0 3611 0 35895 0 21768 0 419563 0 0 0 TERI WILLEY MANAGING DIRECTOR 307114 0 0 0 1980 0 5255 0 34473 0 348822 0 0 0 MICHAEL RECHT CHIEF SCIENTIFIC OFFICER 263417 0 25000 0 1813 0 0 0 222 0 290452 0 0 0 PETER HARVEY CHIEF BUSINESS OFFICER 205907 0 0 0 2772 0 19077 0 49750 0 277506 0 0 0 SANDRA D ROTELLINI CHIEF OPERATING OFFICER 207840 0 0 0 2772 0 30090 0 27246 0 267948 0 0 0 BRETT SPITALE V.P. OF ADVANCEMENT 180094 0 500 0 630 0 26613 0 49750 0 257587 0 0 0 NEIL FRICK S.V.P. OF RESEARCH & MEDIC 190662 0 0 0 1806 0 27271 0 17724 0 237463 0 0 0 KERRI NORRIS VP OF HEALTH EQUITY DIVERSITY AND INCLUSION 171821 0 0 0 630 0 13455 0 29405 0 215311 0 0 0 RENEE PECK SENIOR DEVELOPMENT DIRECTOR 197280 0 0 0 690 0 0 0 303 0 198273 0 0 0 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 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/CBO/HR. THIS WAS LAST UNDERTAKEN IN 2023. 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 673. MANAGEMENT AND GENERAL EXPENSES 7,682. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 8,355. CONSULTING: PROGRAM SERVICE EXPENSES 1,137,896. MANAGEMENT AND GENERAL EXPENSES 173,515. FUNDRAISING EXPENSES 7,802. TOTAL EXPENSES 1,319,213. OTHER PROFESSIONAL FEES: PROGRAM SERVICE EXPENSES 2,287,167. MANAGEMENT AND GENERAL EXPENSES 199,398. FUNDRAISING EXPENSES 3,376. TOTAL EXPENSES 2,489,941. PAYROLL PROCESSING FEES: PROGRAM SERVICE EXPENSES 29,631. MANAGEMENT AND GENERAL EXPENSES 7,658. FUNDRAISING EXPENSES 3,755. TOTAL EXPENSES 41,044. TEMPORARY HELP: PROGRAM SERVICE EXPENSES 724. MANAGEMENT AND GENERAL EXPENSES 78. FUNDRAISING EXPENSES 6. TOTAL EXPENSES 808. 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 BLEEDING DISORDERS FOUNDATION VENTURE FUND LLC 8 THE GREEN SUITE B DOVER DE 19901 SEE SCHEDULE R, PART VII SUPPLEMENTAL INFORMATION DE 7139 2500290 NATIONAL BLEEDING DISORDER FOUNDATION