EIN 72-1282316

Hemophilia Federation of America (HFA)

IRS 501(c) type
501(c)(3)
Num. employees
40
Year formed
1994
Most recent tax filings
2022-12-01
Description
Hemophilia Federation of America is organization that assists and advocates for the bleeding disorders community. To remove barriers to choice of treatment and to improve the care and quality of life for all people with bleeding disorders.
Total revenues
$5,559,810
2022
Total expenses
$5,864,407
2022
Total assets
$6,691,676
2022
Num. employees
40
2022

Program areas at HFA

Hfa research - a community centered, community focused, and community driven program aimed at improving the lives of bleeding disorders community members. Research topics are identified by the community population and focused on patient/community data. Data is collected nationally online as well as locally through hfa's 50-plus member organizations across the country.
Helping hands - designed to establish a rapid, non-invasive source of relief for emergency situations for individuals and families in the bleeding disorders community. Each application is given careful consideration as to the personal circumstances, while ensuring a minimum invasion of privacy for community members. The program also assists individuals with the costs of medically necessary items and durable medical equipment.
Symposium conference - a national annual community-certification educational confernce event that draws hundreds of patients and their families.this conference is a place where community members come together to share information, learn about new advancement, and build a network of support.
Gears for good charity bike ride - encourages people with bleeding disorders to live healthy, active lifestyles. Gears for good is a charity bike ride offered to raise funds for the helping hands program. Riders enjoy meeting new people and building stronger friendships along the way while raising funds for this important cause.
Other activities - provides educational and artistic scholarships to members of the bleeding disorders community, a resource guide for the consumers, and maintains a website with information about the orgaization's programs and services. The organization also publishes a quarterly newsletter called "dateline Federation". In addition, the organization covers the cost of attendance to meetings of the department of health and human servies, the blood products advisory committee of the fda, and the advisory committee on blood safety and availability, and participation in conferences at the invitation of the center for disease control.
Outreach - helps individuals with bleeding disorders and their caregivers learn how to become advocates on thier own behalf through in-person and online training, tool kits, and wev resources. Education and tools are provided to participate in monitoring, learning to self-advocate, and educating about federal and state public policies that impact the lives of people living with bleedidng disorders. Social and print media are actively utilized to extend outreach efforts and bring community together. Four programs are included in outreach: blood brotherhood, blood sisterhood, hfa families,and outreach education

Grants made by HFA

GranteeGrant descriptionAmount
Hemophilia Foundation of MDBudgeting, Yes You Can (Part 2 of 3),everything Credit (Part 3 O 3) Debra Jacobs - Event 9/28/2022,financial Wellness 101 (Debra Jacobs) Part 1/3,game of Life 11/12/2022,intentional Team Building 11/12/2022,joint Health Webinar - Virtual,rap Session - Event 5/21/2022,rap Session - Event 5/21/2022,teen Fitness 12/17/2022,winter Holiday Rap Session 12/10/2022$18,000
Hemophilia Foundation of Southern California (HFSC)Basics of School Advocacy and Got Stress? Strategies for Anxiety and Worry Presented By Dr. Juliana Bloom,, PHD, Bsis Rap Session - English - Event 3/19/2022, Bsis Rap Session - Event 3/19/2022,carrier Guilt & Balancing Family Issues,financial Wellness 101, Facilitated By Debra Jacobs - Event 7/13/2022,mild Matters, Presented By Rebekah Heckathorne, RN$16,000
Virginia Hemophilia FoundationA Pathway for Best Care,adapting Physical Activities for Joint Health - Event 8/13/2022,ages and Stage; Early Childhood,Mind-Body-Heart Connection,my Story Or Resilience & Emerging Therapies,rap Session,trauma and PTSD in the Bleeding Disorders Community.$16,000
...and 30 more grants made totalling $380,000

Who funds Hemophilia Federation of America (HFA)

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Colburn-Keenan FoundationSupport Activities That Benefit the Bleeding Disorders and Chronic Illness Communities$57,500
The Hemophilia Alliance FoundationPromote Hemophilia$10,000
AmazonSmile FoundationGeneral Support$741

Personnel at HFA

NameTitleCompensation
Barbra KavanaughInterim Executi$98,013
Daniel KelseyPresident and Chief Executive Officer
Michelle BurgExecutive Director$110,097
Mable CrescioniProject Director$122,125
Sharon MeyersPast Executive Director / President and Chief Executive Officer$222,810
...and 10 more key personnel

Financials for HFA

RevenuesFYE 12/2022
Total grants, contributions, etc.$3,613,216
Program services$1,947,269
Investment income and dividends$0
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$0
Net income from fundraising events$0
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$-675
Total revenues$5,559,810

Form 990s for HFA

Fiscal year endingDate received by IRSFormPDF link
2022-122023-11-07990View PDF
2021-122023-03-29990View PDF
2021-122023-03-06990View PDF
2020-122021-10-07990View PDF
2019-122021-02-18990View PDF
...and 9 more Form 990s
Data update history
January 29, 2024
Updated personnel
Identified 6 new personnel
January 23, 2024
Posted financials
Added Form 990 for fiscal year 2022
January 23, 2024
Updated personnel
Identified 7 new personnel
January 2, 2024
Used new vendors
Identified 1 new vendor, including
December 23, 2023
Received grants
Identified 4 new grant, including a grant for $57,500 from Colburn-Keenan Foundation
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Political advocacyConducts researchReceives government fundingProvides scholarshipsTax deductible donationsAccepts online donations
General information
Address
999 N Capitol St Ne 301
Washington, DC 20002
Metro area
Washington-Arlington-Alexandria, DC-VA-MD-WV
County
District of Columbia, DC
Website URL
hemophiliafed.org/ 
Phone
(202) 675-6984
Facebook page
hemophiliafed 
Twitter profile
@hemophiliafed 
IRS details
EIN
72-1282316
Fiscal year end
December
Taxreturn type
Form 990
Year formed
1994
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
G20: Birth Defects and Genetic Diseases
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Independent
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