Hemophilia Federation of America
Assisting, educating, and advocating for the bleeding disorders community.
Programs and results
What we aim to solve
HFA works to provide help to people living with a bleeding disorder. We focus on assisting, educating and advocating for the bleeding disorder community. Our goal is to foster empowered people living with a bleeding disorder.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Helping Hands
One of the many strengths of our organization has been our ability to adapt services and programs to the evolving needs of the community. Just three years after our founding, we saw an opportunity to aid our most vulnerable families who are suffering from financial hardship because of their bleeding disorder; it was with this realization that the Helping Hands program was born. Currently in its 24th year of providing financial relief, Helping Hands is one of our longest-running programs and is a cornerstone of the work we do to help the neediest families in the community in an efficient, private and individualized manner. Staffed by social workers, our program advocates for individuals’ assistance and educates them about local and national services to strengthen their ability to succeed while living with a bleeding disorder.
Advocacy Education
Advocacy is at the heart of what we do and is embedded in all our programs and services. Our unwavering commitment to advocating for patient-focused policies has allowed us to build trust in the community and engage in grassroots efforts. We develop materials that help community members navigate the complex healthcare system, and our support empowers members to advocate for themselves, contributing to a unified, national effort to strengthen patient-focused policies. When asked to describe HFA, our advocacy programming participants unanimously mentioned our family and community focus and the high-quality, patient-friendly educational resources our team produces.
Education
With nearly 4,000 enrolled members and a network of 50 Member Organizations to deliver in-person and virtual sessions throughout the country, our team is the definitive resource for educational programming in the community. As a national organization, we provide Member Organizations a broader reach, while offering their local community members access to education that is timely, relevant, engaging and intentional. We create educational content that is customized to meet the needs of each unique community.
Relying on both credentialed subject matter experts and community members with lived experience, HFA offers educational programs in various formats: national webinars, local sessions and rap sessions. HFA provides resources, tools and sessions to educate all members of the community.
Where we work
External reviews
Our results
How does this organization measure their results? It's a hard question but an important one.
Number of conference attendees
This metric is no longer tracked.Totals By Year
Population(s) Served
Caregivers, Families, People with diseases and illnesses
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Number of attendees at our annual Symposium, the largest patient-centered conference in the bleeding disorders community.
Number of independent organizations served
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Number of Member Organizations served.
Total dollars received in contributions
This metric is no longer tracked.Totals By Year
Type of Metric
Other - describing something else
Direction of Success
Increasing
Context Notes
As reported on Line 12 of Form 990.
Number of participants engaged in programs
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Number of enrolled Blood Brothers, Blood Sisters, moms, and Dads.
Total revenue earned to support advocacy efforts
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
Type of Metric
Other - describing something else
Direction of Success
Increasing
Context Notes
Revenue supporting Advocacy efforts.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
Hemophilia Federation of America provides our community:
1. Leadership in monitoring, evaluating, and responding to the needs of people with bleeding disorders.
2. Improve awareness and education of bleeding disorders.
3. Deliver quality programs directly through its members.
4. Foster active collaboration with other organizations that share similar goals.
What are the organization's key strategies for making this happen?
HFA works closely with community member focus groups to identify needs and gaps in services. We establish key partnerships and collaborations in creating quality programming, services and outreach initiatives. We implement programming through our collaborative federation model of 51 local/state-based member organizations. We also provide direct outreach and educational content through our website, social media, webinars, print quarterly newsletter and our annual symposium.
What are the organization's capabilities for doing this?
Since 1994, HFA has created and implemented a wide variety of programs, projects, scholarships and outreach initiatives. HFA garnered support through federal partnerships, private foundation and industry grants. Key organizational accomplishments include a long-term relationship with the Centers for Disease Control and Prevention (CDC) in developing model programs that address health and quality of life for our community. HFA closely follows the financial accounting regulations outlined by the Internal Revenue Services, and additional regulations outlined by the Office of Management and Budget. HFA has consistently increased our organization's funding support allowing us to continually improve our breadth of community services. HFA draws its experience from existing staff and contracted subject experts in the field of capacity building, organizational infrastructure and performance management.
What have they accomplished so far and what's next?
HFA is proud of the work we are doing in advocacy, programming, and assisting those in the bleeding disorders community. We still have much to do and we are working with our partners to accomplish our goals.
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
Hemophilia Federation of America
Board of directorsas of 03/29/2022
Allie Ritcey
Hemophilia Federation of America
Term: 2021 - 2022
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
No data
Gender identity
No data
Transgender Identity
No data
Sexual orientation
No data
Disability
No data