2025-10-06T13:03:54-05:00 2024-12-31 331374517 PKF O'CONNOR DAVIES ADVISORY LLC 20 COMMERCE DRIVE SUITE 301 CRANFORD NJ 070163618 990 2024-01-01 135641857 NATIONAL BLEEDING DISORDERS FOUNDATION NATI 2123283700 1230 AVENUE OF THE AMERICAS 16TH F NEW YORK NY 10020 PETER HARVEY CHIEF BUSINESS OFFICER 2123283700 2025-10-01 1 1 GARRETT M HIGGINS P00543209 9082726200 2025-10-06 2024 2025-03-06 01:10:19Z PETER HARVEY 1230 AVENUE OF THE AMERICAS 16TH FL NEW YORK NY 10020 18860927 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 99 1078 883237 45467 16322358 13694516 1337404 1207808 1005490 1743292 382596 -75479 19047848 16570137 777540 1138320 0 0 11576381 11237387 0 0 1357159 10726427 7270942 23080348 19646649 -4032500 -3076512 33488551 30813469 3788578 3449324 29699973 27364145 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 5500113 182269 324571 HEALTH EDUCATION AND TRAININGNBDF EXPANDED ITS HEALTH COACHING PROJECT, OWN YOUR PATH, FOR MEN AND WOMEN WITH HEMOPHILIA OR VON WILLEBRAND DISEASE (VWD). THE PROGRAM AIMS TO IMPROVE TREATMENT ADHERENCE. NBDF ALSO CONTINUES TO DISTRIBUTE ALL OF ITS EDUCATIONAL PUBLICATIONS FOR THOSE LIVING WITH INHERITABLE BLEEDING DISORDERS, FROM MASAC FOR YOU NEW PUBLICATIONS ON DIAGNOSIS, TREATMENT AND CARE FOR WOMEN AND GIRLS, TO NBDF'S NEW THRIVE CAMPAIGN SHOWCASING 6 EASY STEPS TO LIVING HEALTHY WITH A BLEEDING DISORDER. IN 2024, NBDF DISTRIBUTED 30,777 PUBLICATIONS.THE PRIMARY GOALS OF THE NATIONAL BLEEDING DISORDERS FOUNDATION'S (NBDF'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 2024 NBDF REACHED OUT TO 26 COMMUNITY PARTNERS TO SHARE ABOUT SIGNS AND SYMPTOMS OF BLEEDING DISORDERS. IN ADDITION, CLOSE TO 2,000 WOMEN TOOK THE BETTER YOU KNOW RISK ASSESSMENT TOOL, 76% HAD SYMPTOMS OF A BLEEDING DISORDER, AND OVER 7,600 VISITED VICTORYFORWOMEN.ORG.STEPS FOR LIVING (SFL) 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 LAUNCHED THE REDESIGNED AND REWRITTEN SFL WEBSITE IN ENGLISH AND SPANISH IN JULY 2024 LEADING TO OVER 60,000 VIEWS IN 2024.NBDF'S EDUCATION FOR EMPOWERMENT PROGRAM BRINGS WORKSHOPS OUT TO LOCAL CHAPTER AND HTC EVENTS. NBDF FACILITATED 89 WORKSHOPS IN ENGLISH AND SPANISH, WITH OVER 1200 PARTICIPANTS IN 2024. OF THIS PROGRAM, 86% LEARNED SOMETHING NEW FROM THE SESSIONS, AND 84% PLANNED TO IMPLEMENT THE NEW LEARNINGS OR SKILLS.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 2024, 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 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. IN 2024 NBDF EXPANDED ITS 3D VIDEO SERIES ON THE CLOTTING CASCADE WITH NEW VIDEOS ON FACTOR REPLACEMENT THERAPY AND BISPECIFIC ANTIBODY THERAPY, BOTH IN ENGLISH AND SPANISH. THERE ARE OVER 100,000 VIEWS ACROSS ALL THE SERIES VIDEOS COMBINED SINCE THEY LAUNCHED.AT NBDF'S 76TH BLEEDING DISORDERS CONFERENCE (BDC), HELD SEPTEMBER 12-14, 2024, AT THE WORLD CONGRESS CONVENTION CENTER IN ATLANTA, GEORGIA NBDF DELIVERED 64 CONSUMER TRACK EDUCATIONAL SESSIONS, AS WELL AS 4 NETWORKING HOURS FOR CONNECTIONS AND SUPPORT. OF THOSE WHO ATTENDED, 87% REPORTED LEARNING SOMETHING NEW AND 84% SAID THEY WOULD IMPLEMENT THOSE NEW LEARNINGS OR SKILLS. NBDF ALSO OFFERED 55 HOURS OF LIVE IN-PERSON TRAINING FOR HEALTH CARE PROVIDERS IN FOUR CONCURRENT EDUCATIONAL TRACKS. CONTINUING EDUCATION CREDITS WERE MADE AVAILABLE TO EIGHT DISTINCT LICENSED HEALTHCARE DISCIPLINES AS FOLLOWS: - PHYSICIANS/OTHER PRESCRIBERS MD/DO PHYSICIANS; PHYSICIAN ASSISTANTS; NURSE PRACTITIONERS - (A MAXIMUM OF 8.75 AMA PRA CATEGORY 1 CREDITS) - PHARMACISTS - (FOR 8.75 CONTACT HOURS (0.875 CEUS) OF THE ACCREDITATION COUNCIL FOR PHARMACY EDUCATION (ACPE) - REGISTERED NURSES AND NURSE PRACTITIONERS (A MAXIMUM OF 12.5 ANCC ACCREDITED NURSING CONTINUING PROFESSIONAL DEVELOPMENT CONTACT HOURS ) - MEDICAL AND CLINICAL SOCIAL WORKERS [12.50 CLINICAL/ETHICS ASWB-ACE APPROVED CONTINUING EDUCATION CREDITS (UP TO 11.0 CLINICAL AND 1.5 ETHICS)] - PHYSICAL THERAPISTS AND PHYSICAL THERAPY ASSISTANTS (UP TO 12.5 PT CEUS, STATE DEPENDENT)1,810 INDIVIDUALS ATTENDED OUR 2024 BLEEDING DISORDERS CONFERENCE OVERALL, WHICH INCLUDES A TOTAL OF 326 HEALTH CARE PROVIDERS (OF WHICH, 245 PROVIDERS WERE ISSUED CME/CE CERTIFICATES FOR THEIR SUCCESSFUL PARTICIPATION). HANDI, NBDF'S INFORMATION RESOURCE CENTER (RENAMED TO THE NEIL FRICK RESOURCE CENTER IN THE BEGINNING OF 2025), PROVIDED CUSTOMIZED RESPONSES TO 1,082 PHONE OR E-MAIL INFORMATION REQUESTS ABOUT BLEEDING OR OTHER RARE DISORDERS IN 2024. HANDI WROTE 54 MEDICAL NEWS STORIES AND JOURNAL ARTICLE SUMMARIES THAT WERE POSTED ON THE NBDF WEBSITE. HANDI HIGHLIGHTS, A NEW INFORMATIONAL FLYER PROVIDING DIGITAL LINKS TO INTERNAL AND EXTERNAL RESOURCES IN KEY AREAS FOR PARENTS/CAREGIVERS, INDIVIDUALS LIVING WITH AN INHERITABLE BLEEDING DISORDER AND HEALTHCARE PROVIDERS WAS MADE AVAILABLE ON NBDF'S WEBSITE. A TOTAL OF NINE "HANDI HIGHLIGHTS" WERE POSTED IN 2024 IN THE SUBJECT AREAS OF: INTRODUCTORY EDUCATION RESOURCES, PAIN MANAGEMENT, NOVEL TECHNOLOGIES AND ADVANCES IN TREATMENT, CAREGIVING, MENTAL HEALTH, BACK TO SCHOOL, JOINT HEALTH, STUDENTS OFF TO COLLEGE, WOMEN AND GIRLS LIVING WITH BLEEDING DISORDERS. HANDI ALSO AWARDED THE 2024 KEVIN CHILD SCHOLARSHIP TO A QUALIFIED STUDENT FROM BIGFORK, MONTANA. NBDF'S MEDICAL AND SCIENTIFIC ADVISORY COUNCIL (MASAC) ISSUED NINE (NEW OR UPDATED) DOCUMENTS IN 2024:MASAC DOCUMENT 291 - PHYSICAL THERAPY MANAGEMENT FOR BONE HEALTH IN PEOPLE WITH BLEEDING DISORDERSMASAC DOCUMENT 290 - MASAC RECOMMENDATIONS CONCERNING PRODUCTS LICENSED FOR THE TREATMENT OF HEMOPHILIA AND SELECTED DISORDERS OF THE COAGULATION SYSTEM MASAC DOCUMENT 289 - RECOMMENDATIONS ON INCREASING ACCESS TO MENTAL HEALTH AND SUBSTANCE USE DISORDER TREATMENT FACILITIES AND PROGRAMS FOR PERSONS WITH BLEEDING DISORDERS MASAC DOCUMENT 288 - MASAC RESOLUTION ON PROPOSED HEMOPHILIA TREATMENT GUIDELINES FROM THE INTERNATIONAL SOCIETY ON THROMBOSIS AND HAEMOSTASIS (ISTH) MASAC DOCUMENT 287 - RESOLUTION ON THE WORLD HEALTH ORGANIZATION ESSENTIAL MEDICINE LIST MASAC DOCUMENT 286 - MASAC RECOMMENDATIONS REGARDING DIAGNOSIS AND MANAGEMENT OF INHERITED BLEEDING DISORDERS IN GIRLS AND WOMEN WITH PERSONAL AND FAMILY HISTORY OF BLEEDING MASAC DOCUMENT 285 - MASAC RECOMMENDATION REGARDING THE NEED FOR BLEEDING DISORDERS GENE THERAPY LEXICON DEVELOPMENTMASAC DOCUMENT 284 - MASAC RECOMMENDATIONS CONCERNING PRODUCTS LICENSED FOR THE TREATMENT OF HEMOPHILIA AND SELECTED DISORDERS OF THE COAGULATION SYSTEM MASAC DOCUMENT 283 - PHYSICAL THERAPY MANAGEMENT FOR PEOPLE WITH BLEEDING DISORDERS AND CHRONIC PAIN 4191067 284173 0 COMMUNITY SERVICES NBDF'S PUBLIC POLICY DEPARTMENT WORKS TO ADVOCATE FOR POLICIES THAT PROMOTE 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 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. 3320289 593161 0 RESEARCHNATIONAL RESEARCH BLUEPRINT (NRB): A COMMUNITYWIDE PROJECT TO REDEFINE THE WAY RESEARCH IN THE BLEEDING DISORDERS COMMUNITY WAS LAUNCHED IN 2019. THE GOALS OF THE NATIONAL RESEARCH BLUEPRINT (NRB) ARE: (1) DEVELOP A MULTIDISCIPLINARY INTEGRATED RESEARCH ENTERPRISE CENTERED IN A NETWORK OF BOTH SPECIALTY AND COMMUNITY-BASED CARE; DRIVEN BY PATIENTS WITH INHERITED BLEEDING DISORDERS (PWIBD) AS LIVED EXPERIENCE EXPERTS (LEES); EMBEDDED IN THE PRINCIPLES OF SOCIAL JUSTICE; TO STEADILY ADVANCE 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. IN 2024, NBDF CONVENED KEY STAKEHOLDERS IN A NRB SUMMIT TO PRESENT THE FRAMEWORK AS DEFINED BY ALL WORKING GROUPS. AS A RESULT, FIVE MANUSCRIPTS DESCRIBING THE PROCESS ARE IN PROGRESS, WITH AN ESTIMATED SUBMISSION DATE DURING THE SUMMER OF 2025. THE RESEARCH TEAM PRESENTED IN NUMEROUS SPEAKING ENGAGEMENTS NATIONALLY TO CREATE AWARENESS AND ESTABLISH PARTNERSHIPS. 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. NUMEROUS PRESENTATIONS AND ABSTRACTS WERE PRESENTED AND A MANUSCRIPT DETAILING ITS DEVELOPMENT WAS PUBLISHED IN A PEER REVIEWED JOURNAL.2024 CVR HIGHLIGHTS: - NBDF HAS A MULTIPRONG COMPREHENSIVE ENROLLMENT PLAN. CURRENT ENROLLMENT IS OVER 1,000 PARTICIPANTS. - THE ENROLLMENT, BASELINE SURVEY AND PARTICIPANT DASHBOARD ARE NOW IN BOTH ENGLISH AND SPANISH. VIRTUAL ADVISORY PANELS (VAPS) AND IN PERSON ADVISORY PANELS (PAPS): VAPS AND PAPS ARE VIRTUAL AND IN-PERSON FOCUS GROUPS. FOUR VAPS WERE FACILITATED IN 2024. A TOTAL OF 24 ADVISORS PARTICIPATED. INFORMATION GATHERED PROVIDED PATIENT/CAREGIVER INSIGHTS ON EDUCATIONAL RESOURCES, HEALTH LITERACY, CLINICAL TRIAL DESIGN, IDENTIFYING DISPARITIES AND GAPS IN CARE. RESEARCH JOURNAL CLUB: THE VIRTUAL RESEARCH JOURNAL CLUB WAS OPEN TO THE COMMUNITY, RESEARCHERS, CLINICIANS, AND CHAPTERS. IN 2024 NBDF HELD TWO SESSIONS.2024 NBDF RESEARCH GRANTS AWARDS: JUDITH GRAHAM POOL POSTDOCTORAL RESEARCH (JGP) - DR. HUONG CHAU AT STANFORD: ELUCIDATING INNATE IMMUNE RESPONSE TO FACTOR IX THROUGH HEMOPHILIA B MOUSE MODEL - DR. MARISSA BRAKE, BETH ISRAEL MEDICAL CENTER: THE ROLE OF TISSUE FACTOR IN BLOOD COAGULATION ACTIVATION AND BLEEDING RISK IN MICE AND HUMANSCAREER DEVELOPMENT AWARD: (CDA) FUNDED BY SANOFI - DR. BHAVYA DOSHI- CHOP TRANSFERRING TO EMORY 2025: UNRAVELING THE CYTOKINE AND CELLULAR IMMUNE RESPONSES UNDERLYING FVIII IMMUNOGENICITYEXCELLENCE AWARDS FOR NURSING, SOCIAL WORK, & PHYSICAL THERAPY: - NURSING: LOUISE BACA/MAINE HEALTH: OUTREACH IN RURAL MAINE: IDENTIFYING NEW PATIENTS AND ESTABLISHING SATELLITE SITES. - PHYSICAL THERAPY: JOHN DELOACH/ U OF FLORIDA: ASSESSING EFFECTS OF EXERCISE ON VASCULAR ACCESS, TRYPANOPHOBIA, AND KNESIOPHOBIA IN HEMOPHILIA PATIENTS. - SOCIAL WORK: KYELIN COOK/INTERMOUNTAIN HEALTHCARE FOUNDATION: (CONTRACTING PENDING) ADDRESSING GAPS IN CARE AMONG MENSTRUATING INDIVIDUALS IN UTAHNBDF-TAKEDA CLINICAL FELLOW DR. CALLIE BERKOWITZ, MD, UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL WAS SELECTED TO RECEIVE MENTORED-TRAINING IN 2024-2026COREHEM MENTAL HEALTH TOOL: DEVELOPED THROUGH AN INITIATIVE CO-LED BY NBDF, COREHEM MENTAL HEALTH OUTLOOK QUESTIONNAIRE (COREHEM-MHO) IS A PATIENT-REPORTED OUTCOME MEASUREMENT (PROM) 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. THE PROJECT HAS 12 PEER-REVIEWED PUBLICATIONS TO DATE AND HAS BEEN PRESENTED AT TENS OF NATIONAL AND INTERNATIONAL MEDICAL CONFERENCES. WE ARE CURRENTLY COLLABORATING WITH 4 PARTNERS WHO ARE USING THE TOOL IN CLINICAL TRIALS AND PRACTICE. 1608296 78717 0 CHAPTER SERVICES NBDF'S CHAPTER SERVICES DEPARTMENT PROVIDES COMMUNITY SUPPORT BY HELPING ITS 52 MEMBER CHAPTERS OFFER EDUCATION, TRAINING, RESOURCES AND REFERRALS TO AFFECTED MEMBERS OF THE BLEEDING DISORDERS COMMUNITY IN THE AREAS THAT EACH CHAPTER SERVES. CHAPTER SERVICES OFFERS THE MEMBER CHAPTERS FINANCIAL SUPPORT IN THE FORM OF GRANTS AND COVERS SOME TRAVEL EXPENSES TO SUPPORT 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 AS WELL AS ONGOING COACHING AND SUPPORT ON FINANCIAL SUSTAINABILITY, PROCESSES AND PROCEDURES FOR BEST NONPROFIT PRACTICE. IN 2024, CHAPTER SERVICES OFFERED 23 EDUCATIONAL WEBINAR SERIES SESSIONS, HELD ONE 4-DAY IN-PERSON NATIONAL LEADERSHIP SEMINAR OFFERING TRAINING, AND OFFERED A FULL "CHAPTER TRAINING TRACK" AT NBDF'S ANNUAL BLEEDING DISORDERS CONFERENCE. THESE EDUCATION OFFERINGS FOCUS ON DIVERSIFICATION OF FUNDING STRATEGIES, HEALTH EQUITY AND INCLUSION, BOARD DEVELOPMENT AND BUILDING. ADDITIONALLY, THE UNITE FOR BLEEDING DISORDERS WALK (PEER-TO-PEER FUNDRAISING CAMPAIGN), OVERSEEN AND PROVIDED BY THE CHAPTER SERVICES DEPARTMENT, EMPOWERED 5,696 PARTICIPANTS TO RAISE A COLLECTIVE $1.9M FOR THEIR LOCAL CHAPTERS. 1608296 78717 0 14619765 1 1 0 1 0 0 0 0 0 1 1 0 1 0 1 1 0 1 0 1 1 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 84 0 99 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 1 1 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 RYAN GRIFFITH CHAIR 10.00 X X 0 0 0 SUSAN HARTMANN VICE CHAIR 10.00 X X 0 0 0 JOSEPH ALIOTO MD TREASURER 10.00 X X 0 0 0 PAULETTE BRYANT MD SECRETARY 10.00 X X 0 0 0 JAMES R CHRISTENSEN 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 MEGAN LEE 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 SHARON RICHARDSON PHD DIRECTOR 10.00 X 0 0 0 LUCAS TAYLOR DIRECTOR 10.00 X 0 0 0 KELLY WORNALL DIRECTOR 10.00 X 0 0 0 LEONARD VALENTINO PRESIDENT & CEO - THRU 3/31/24 40.00 X 135983 0 15154 PHILIP GATTONE PRESIDENT & CEO 40.00 X 333391 0 16974 PETER HARVEY CHIEF BUSINESS OFFICER 40.00 X 214515 0 76019 MICHAEL RECHT CHIEF SCIENTIFIC OFFICER 40.00 X 398637 0 16657 SANDRA D ROTELLINI CHIEF OPERATING OFFICER 40.00 X 219819 0 56471 TERI WILLEY MANAGING DIRECTOR 40.00 X 306003 0 42675 NATHAN SCHAEFER S.V.P. OF PUBLIC POLICY 40.00 X 175228 0 61297 TIMOTHY BRENT VENTURE PRINCIPAL 40.00 X 175948 0 70987 KERI NORRIS SVP OF HEALTH ACCESS & STRATEGIC INNOVATION 40.00 X 178161 0 46804 RENEE PECK SENIOR DEVELOPMENT DIRECTOR 40.00 X 205808 0 4462 2343493 0 407500 28 0 1 0 MANIFEST LLC 4110 N SCOTTSDALE ROAD SUITE 315 SCOTTSDALE AZ 85251 PRODUCTION/HEMAWARE PUBLICATION 481417 IMPACT EDUCATION LLC 589 SKIPPACK PIKE SUITE 200 BLUE BELL PA 19422 CONSULTANT FOR MEDICAL EDUCATION 308014 CCR SOLUTIONS INC 25 WALPOLE SOUTH BOULEVARD 1 UNI WALPOLE MA 02081 AUDIOVISUAL SERVICES 227500 ARTEMIS POLICY GROUP LLC 1150 CONNECTICUT AVE NW STE 803 WASHINGTON DC 20036 STRATEGIC ADVISORY SERVICES 187500 ETK COMMUNICATIONS 7730 RUE DE BORDEAUX MONTREAL QUEBEC CA H2E 2NL LEADERSHIP SOLUTION SERVICES 137738 7 8140 446290 547874 12692212 13694516 EDUCATIONAL/MEDICAL LITERATURE 541800 883237 883237 EDUCATION SEMINARS 611710 324571 324571 1207808 802935 802935 3078261 2137904 940357 940357 940357 65782 446290 152886 -87104 -87104 CREDIT CARD REBATE 900099 11625 11625 11625 16570137 324571 883237 1667813 1014936 1014936 118384 118384 5000 5000 1483619 717341 766278 7313988 4999069 1497008 817911 540744 387503 120731 32510 1267383 840902 263938 162543 631653 403615 152047 75991 3271 3271 59000 59000 187500 187500 58801 58801 1795977 1565647 213748 16582 14463 13073 1390 285822 219472 44851 21499 399711 322473 52778 24460 107827 39968 62307 5552 1467756 1301077 85663 81016 1480100 1374359 90488 15253 21866 14628 5012 2226 84256 57489 14112 12655 UBIT 18317 18317 STATIONERY AND PRINTING 538956 527732 5922 5302 MEMBERSHIP DUES 390296 218238 100878 71180 PROGRAM SUPPLIES 298088 270027 17962 10099 58935 21332 35223 2380 19646649 14619765 3669725 1357159 7217991 4943233 520560 523074 1474349 1039650 0 16000 0 2875 484222 329625 109328 90196 40998 19132 22412096 21794651 806849 1626904 531486 518325 33488551 30813469 2147290 1977199 899697 933044 219085 29337 522506 509744 3788578 3449324 X 20009403 18818497 9690570 8545648 29699973 27364145 33488551 30813469 -3076512 740684 0 X X 0 1 X 1 0 X 19810154 22875439 16663253 16322358 13694516 89365720 19810154 22875439 16663253 16322358 13694516 89365720 46162395 43203325 730271 770403 402236 694613 802935 3400458 105704 306003 342256 128822 50082 932867 26071 1408 15059 513328 11625 567491 94266536 931792 0.45830 0.45720 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 1 0 1 14094 0 0 1 224452 1 39243 0 277789 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. 1916569 209638 78078 2048129 1785311 131258 1916569 2146385 -361074 1785311 1983771 211918 49304 2146385 1795609 203554 15392 1983771 0.73238 0.26762 0 0 109328 90196 19132 19132 POSTER CHILD FILM 50000 C ANVESANA 276904 C SPARK BIOMEDICAL INC. 600000 C BE BIOPHARMA INC. 700000 C 1626904 DEFERRED PENSION LIABILITY 469986 OPERATING LEASE LIABILITIES 39758 509744 X 17404906 740684 152886 893570 16511336 58801 58801 16570137 19740734 152886 152886 19587848 58801 58801 19646649 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 $548,129 AND $416,569 AS OF DECEMBER 31, 2024 AND 2023, 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 2021. PART XI, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE NETTED AGAINST REVENUE 152,886. PART XII, LINE 2D - OTHER ADJUSTMENTS: SPECIAL EVENTS EXPENSE NETTED AGAINST REVENUE 152,886. NORTH AMERICA 0 1 PROGRAM SERVICES LEADERSHIP SOLUTION SERVICES 137738 0 1 0 0 0 1 137738 0 137738 0 0 0 0 0 0 RED TIE SOIREE 236340 219990 16350 13834 43812 4750 20572 WALKS 204056 169547 34509 25 309 1795 2579 1866 27934 5 71676 56753 14923 385 452 5900 10447 300 17926 512072 446290 65782 410 761 21529 56838 6916 66432 152886 -87104 1 UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL 135 DAUER DRIVE CHAPEL HILL NC 27599 566001393 501(C)(3) 200000 0 CLINICAL FELLOWSHIP AWARD THE BOARD OF TRUSTEES OF THE LELAND STANFORD JUNIOR UNIVERSITY PO BOX 884253 LOS ANGELES CA 90088 941156365 501(C)(3) 104000 0 RESEARCH JUDITH GRAHAM POOL AWARD BETH ISRAEL DEACONESS MEDICAL CENTER 330 BROOKLINE AVENUE BOSTON MA 02215 042103881 501(C)(3) 104000 0 RESEARCH JUDITH GRAHAM POOL AWARD WORLD FEDERATION OF HEMOPHILIA USA PMB 142 911 CENTRAL AVENUE ALBANY NY 12206 161513923 501(C)(3) 90000 0 WOMEN & GIRLS WITH BLEEDING DISORDERS, AND CHAPTERS CHALLENGE GRANTS EMORY UNIVERSITY 1599 CLIFTON ROAD NORTHEAST 4TH FLOOR ATLANTA GA 30322 580566256 501(C)(3) 70000 0 CAREER DEVELOPMENT AWARD BRIGHAM AND WOMEN'S HOSPITAL 75 FRANCIS STREET BOSTON MA 02115 042312909 501(C)(3) 70000 0 CAREER DEVELOPMENT AWARD ASOCIACION PUERTORRIQUENA DE HEMOFILIA PMB 633 PO BOX 29005 00929-0005 SAN JUAN PR 00929 660559280 501(C)(3) 18000 0 STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS INTERMOUNTAIN HEALTHCARE FOUNDATION INC 36 SOUTH STATE STREET SALT LAKE CITY UT 84111 800225150 501(C)(3) 15000 0 SOCIAL WORK EXCELLENCE FELLOWSHIP UNIVERSITY OF FLORIDA 300 SOUTHWEST 13TH STREET GAINESVILLE FL 32611 596002052 501(C)(3) 15000 0 PHYSICAL THERAPY EXCELLENCE FELLOWSHIP MAINE HEALTH ONE DANA COURT WESTBROOK ME 04092 010238552 501(C)(3) 15000 0 NURSING EXCELLENCE FELLOWSHIP BLEEDING DISORDER ASSOCIATION OF SC 25 WOODS LAKE ROAD SUITE 300 GREENVILLE SC 29607 237400632 501(C)(3) 14000 0 STATE BASED ADVOCACY COALITION & CHAPTER CAPACITY GRANTS HEMOPHILIA FOUNDATION OF MICHIGAN 1921 WEST MICHIGAN AVENUE YPSILANTI MI 48197 381905673 501(C)(3) 14000 0 CHAPTER CAPACITY BUILDING & UNITE WALK GRANTS WESTERN PENNSYLVANIA BLEEDING DISORDERS 775 FOURTH STREET 1ST FLOOR BEAVER PA 15009 251359331 501(C)(3) 13500 0 STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS GREAT LAKES HEMOPHILIA FOUNDATION 638 NORTH 18TH STREET SUITE 108 MILWAUKEE WI 53233 237367636 501(C)(3) 13500 0 STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS GREATER OHIO BLEEDING DISORDERS FOUNDATION 17407 LORAIN AVENUE 206 CLEVELAND OH 44111 341018501 501(C)(3) 12500 0 STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS PACIFIC NORTHWEST BLEEDING DISORDERS 456 SOUTHWEST MONROE AVENUE CORVALLIS OR 97333 930551733 501(C)(3) 12500 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) 12000 0 STATE BASED ADVOCACY COALITION GRANT HEMOPHILIA COUNCIL OF CALIFORNIA 717 K STREET 501 SACRAMENTO CA 95814 680182998 501(C)(3) 11500 0 STATE BASED ADVOCACY COALITION GRANT TEXAS CENTRAL BLEEDING DISORDERS 12700 HILLCREST ROAD 191 DALLAS TX 75230 751187148 501(C)(3) 8750 0 STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS GATEWAY HEMOPHLIA ASSOCIATION 4976 EICHELBERGER STREET ST LOUIS MO 63109 431447057 501(C)(3) 8500 0 STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS NEW ENGLAND HEMOPHILIA ASSOCIATION 347 WASHINGTON STREET SUITE 402 DEDHAM MA 02026 046111861 501(C)(3) 6000 0 STATE BASED ADVOCACY COALITION & UNITE WALK GRANTS VIRGINIA HEMOPHILIA FOUNDATION 9702 GAYTON ROAD SUITE 277 RICHMOND VA 23238 541183181 501(C)(3) 5500 0 CHAPTER CAPACITY BUILDING & UNITE WALK GRANTS BLEEDING DISORDER ALLIANCE OF N DAKOTA PO BOX 548 FARGO ND 58107 471684681 501(C)(3) 5250 0 CHAPTER CAPACITY BUILDING & UNITE WALK GRANTS 23 0 CHAPTERS EMERGENCY FINANCIAL ASSISTANCE TO FAMILIES WITH BLEEDING DISORDERS 92 13700 SCHOLARSHIP AWARD 1 1000 TRAVEL GRANTS TO ANNUAL CONFERENCE 119 103684 PART I, LINE 2: BASED ON THE NBDF REQUIREMENTS, ALL CHAPTERS THAT WERE AWARDED GRANTS PROVIDE QUARTERLY PROGRAM AND FINANCIAL REPORTS REGARDING THEIR GRANTS WITH NBDF. ONLY AFTER SUBMISSION OF A QUARTERLY PROGRAM REPORT DESCRIBING THEIR PROGRESS IN COMPLETING DELINEATED TASKS AND COMPLETE FINANCIAL REPORTING NBDF 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 NBDF 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 MICHAEL RECHT CHIEF SCIENTIFIC OFFICER 370865 0 25000 0 2772 0 16297 0 360 0 415294 0 0 0 PHILIP GATTONE PRESIDENT & CEO 302939 0 28000 0 2452 0 0 0 16974 0 350365 0 0 0 TERI WILLEY MANAGING DIRECTOR 302808 0 0 0 3195 0 19144 0 23531 0 348678 0 0 0 PETER HARVEY CHIEF BUSINESS OFFICER 211743 0 0 0 2772 0 23771 0 52248 0 290534 0 0 0 SANDRA D ROTELLINI CHIEF OPERATING OFFICER 217047 0 0 0 2772 0 31316 0 25155 0 276290 0 0 0 TIMOTHY BRENT VENTURE PRINCIPAL 174658 0 0 0 1290 0 18739 0 52248 0 246935 0 0 0 NATHAN SCHAEFER S.V.P. OF PUBLIC POLICY 174808 0 0 0 420 0 25341 0 35956 0 236525 0 0 0 KERI NORRIS SVP OF HEALTH ACCESS & STRATEGIC INNOVATION 177531 0 0 0 630 0 17573 0 29231 0 224965 0 0 0 RENEE PECK SENIOR DEVELOPMENT DIRECTOR 205118 0 0 0 690 0 4102 0 360 0 210270 0 0 0 LEONARD VALENTINO PRESIDENT & CEO - THRU 3/31/24 98444 0 36800 0 739 0 9170 0 5984 0 151137 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). 990 PART VI, SECTION B, LINE 15B 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.BLEEDING.ORG OR UPON WRITTEN REQUEST OR BY CALLING THE ORGANIZATION DIRECTLY. 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 1230 AVENUE OF THE AMERICAS 16TH FL NEW YORK NY 10020 393522973 SEE SCHEDULE R, PART VII SUPPLEMENTAL INFORMATION DE 32058 2134716 NATIONAL BLEEDING DISORDER FOUNDATION SCHEDULE R, PART I, COLUMN B FUND RESEARCH INTO NEW TREATMENTS AND CURES FOR INHERITABLE BLOOD AND BLEEDING DISORDERS.