Form 990 for tax year 2022

Totals

Total revenue

$18,150,168

Total expenses

$23,065,785

Contributions and grants received

$16,663,253

Grants paid

$1,381,783

Program service revenue

$1,221,641

Investment income

$400,817

Other revenue

-$135,543

Total assets, end of year

$37,819,346

Total liabilities, end of year

$6,435,629

Net assets or fund balances, end of year

$31,383,717

Program services expenses (Part IX)

$17,113,276

Management and general expenses

$4,585,725

Fundraising expenses

$1,366,784

Program service expenses (Part III)

$17,113,276

Program services were 74.2% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2022

• 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.

  Expenses $5,899,711 · Grants $131,153 · Revenue $221,293

• 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.

  Expenses $5,029,506 · Grants $215,257

• Withheld by Nonprofiteer: this text may name a private individual.

  Expenses $4,067,409 · Grants $696,862

• 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.

  Expenses $2,116,650 · Grants $338,511

As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here. A text marked withheld matched a screen for wording that may name a private individual, such as an honorific or "in memory of". Most of what it withholds names no one; it is withheld so that what does is never shown.

Listed in Part VII

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

• THE CHILDREN'S HOSPITAL OF PHILADELPHIA

  $200,000

  NHF-TAKEDA CLINICAL FELLOWSHIP

• UNIVERSITY OF WASHINGTON

  $200,000

  NHF-TAKEDA CLINICAL FELLOWSHIP

• BAYLOR COLLEGE OF MEDICINE

  $156,000

  RESEARCH JEANNE MARIE LUSHER DIVERSITY FELLOWSHIP

• WESTERN WASHINGTON UNIVERSITY

  $104,000

  RESEARCH JUDITH GRAHAM POOL AWARD

• NEW ENGLAND HEMOPHILIA ASSOCIATION

  $30,500

  CHAPTER CAPACITY BUILDING GRANT, UNITE WALK AND STATE BASED COALITION GRANTS

• BLEEDING DISORDER ASSOCIATION OF SC

  $30,000

  STATE BASED ADVOCACY COALITION & CHAPTER CAPACITY GRANTS

• ASOCIACIN PUERTORRIQUEA DE HEMOFILIA

  $28,000

  CHAPTER CAPACITY BUILDING GRANT

• BLEEDING DISORDERS ASSN OF NE NEW YORK

  $27,875

  STATE BASED ADVOCACY COALITION & CHAPTER CAPACITY GRANTS

• WESTERN PENNSYLVANIA BLEEDING DISORDERS

  $27,470

  STATE BASED ADVOCACY COALITION & CHAPTER CAPACITY GRANTS

• HEMOPHILIA FOUNDATION OF MICHIGAN

  $23,000

  CHAPTER CAPACITY BUILDING & UNITE WALK GRANTS

The 10 largest by cash amount. The API serves every itemized grant.

Taxable family on this return

Schedule R Parts I, III and IV, as filed. These record ownership and control, not shared board members or money moved.

Provenance

Return type

form_990

Tax year

2022

Filed

13 October 2023

IRS schema version

2022v5.0

Source object

202302869349300135

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

The source document this was parsed from is served over the API, which is where bulk and document access live.