Virginia Hemophilia Foundation

What Virginia Hemophilia Foundation does

Virginia Hemophilia Foundation, operating since 2025 as Virginia Bleeding Disorders Foundation (VABDF), is a 501(c)(3)-style nonprofit founded in 1975 as the United Virginia Hemophilia Chapter of the National Hemophilia Foundation. Headquartered in Richmond, Virginia, it serves individuals and families affected by inherited bleeding disorders—including hemophilia, von Willebrand disease, rare factor deficiencies, and platelet disorders—across the Commonwealth of Virginia, excluding certain Northern Virginia jurisdictions served by the Hemophilia Association of the Capital Area (HACA). The organization delivers education, advocacy, and community programs through signature offerings such as Camp Youngblood (a week-long overnight summer camp at Camp Holiday Trails with on-site medical care for ages 7-17), annual education meetings, the Fall Community Education Weekend, the Lyman Fisher Scholarship ($2,000/academic year), the Terry Lamb Enrichment Scholarship, travel grants for national meetings, financial assistance, and MedicAlert assistance. Distribution is community-led and direct, relying on referrals from Hemophilia Treatment Centers at VCU and UVA, peer networks, email newsletters, and active social media presence.

The business model is a donation-and-sponsorship nonprofit with no sales revenue. Funding comes from individual donations (via Bloomerang CRM and PayPal), corporate sponsorships from major hemophilia therapeutics manufacturers (Bayer, CSL Behring, Genentech, Novo Nordisk, Takeda, Pfizer, Medexus, BioMatrix, CVS Specialty Pharmacy), foundation grants (e.g., Colburn-Keenan), and national affiliations with the National Bleeding Disorders Foundation and Hemophilia Federation of America. Constituent-facing fees are nominal and largely waived for financial hardship: $25-$50 per family for events and camp applications, with the overwhelming majority of programs (education, advocacy, mental health resources) delivered free to eligible constituents. The pricing model is effectively subsidized at zero or near-zero price to end users, with cost covered by philanthropic and corporate funds.

The organization operates with a lean staff of 1-10 (previously two staff members) and is actively hiring as of June 2026, the first material headcount expansion in recent memory. A consequential leadership transition occurred in late 2025 when longtime Executive Director Kelly Waters (nearly 20 years tenure) departed for the Hemophilia Alliance on September 15, 2025, and Heather Conner—who had 15 years of service with the chapter—assumed the Executive Director role on December 1, 2025. The organization is governed by a Board of Directors (Amy Walker as Board President) and maintains no parent company, subsidiaries, or equity ownership. Revenue is not publicly disclosed; channel mix, donor concentration in pharmaceutical sponsors, and scale profiles suggest annual operating inflows in the low six to low seven figures.

Name

Virginia Hemophilia Foundation

Legal name

Virginia Hemophilia Foundation

Website

https://vahemophilia.org

Company type

Private

Founded year

1975

Operating status

Operating

Headcount range

1–10 employees

Short description

Virginia Hemophilia Foundation (rebranded as Virginia Bleeding Disorders Foundation) is a 1975-founded Richmond, Virginia nonprofit providing education, advocacy, scholarships, and community programs for individuals and families affected by inherited bleeding disorders across the Commonwealth of Virginia.

Ownership category

akta.pro rank

Product category

Nonprofit Patient Advocacy Services

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Community Health, Prevention & Health Education (BPAGACAC)

akta.pro secondary industry

Youth Mental Health, Counseling & Wellbeing (Education-Linked) Nonprofits (BPAGADAK)

Keywords

• Bleeding disorders education
• Nonprofit patient advocacy
• Hemophilia community support
• Community health programs
• Patient assistance services

Headquarters

HQ city

Richmond

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Charitable Contributions: The organization relies on donations from individuals, corporations, and foundations to fund programs and services for the bleeding disorders community.
2. Corporate Sponsorships: Pharmaceutical companies including Bayer, CSL Behring, Genentech, Novo Nordisk, Takeda, Pfizer, and others sponsor events, programs, and scholarships.

Pricing tiers

Go-to-market motion1 record

Distribution channels3 records

Marketing channels5 records

Core offering

The Virginia Hemophilia Foundation (now Virginia Bleeding Disorders Foundation, VABDF) is a private nonprofit that delivers education, advocacy, and community programs for individuals and families affected by inherited bleeding disorders across Virginia. Its offering suite includes educational meetings and workshops, the Camp Youngblood summer camp for children ages 7-17, scholarships (Lyman Fisher Scholarship, Terry Lamb Enrichment Scholarship), travel grants to national bleeding disorders conferences, financial assistance, MedicAlert assistance, mental health resources, and policy advocacy.

Product overview

The Virginia Bleeding Disorders Foundation (VABDF), formerly Virginia Hemophilia Foundation (VHF), operates as a single integrated non-profit service organization offering education, advocacy, and community programs for individuals and families affected by inherited bleeding disorders. The core offerings include educational meetings and programs, annual conferences, Camp Youngblood (a medical summer camp), mental health resources, and financial assistance including scholarships (Lyman Fisher Scholarship, Terry Lamb Enrichment Scholarship) and travel grants for national meetings. The organization serves Virginia residents excluding certain Northern Virginia localities through direct programming, community events, and partnerships with healthcare providers and industry sponsors.

Differentiator

Problem solved

Functional benefit

Products and services

• Camp Youngblood
• Education Programs
• Lyman Fisher Scholarship
• Terry Lamb Enrichment Scholarship
• Travel Grant for National Meetings
• Financial Assistance Program Family assistance program providing financial support to individuals and families affected by inherited bleeding disorders.
• MedicAlert Assistance MedicAlert medical identification assistance program for individuals with bleeding disorders.
• Annual Education Meeting Annual education meeting bringing together the inherited bleeding disorder community to network and share information on a variety of topics, with educational sessions, sponsor exhibits, and recognition of scholarship recipients; $25 per household registration fee.
• Mental Health Resources Mental health support resources and programs for individuals and families living with bleeding disorders, including connection to counseling services and crisis support.

Quantifiable outcome

• Over 2,000 attendees at national Bleeding Disorders Conference supported by VHF travel grants
• +1 more outcomes

Named customers1 record

Segments2 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

15 partnerships are on record, tiered core and minor.

• Hemophilia Association of the Capital Area (HACA)coreStrategic or Co-development PartnerJoint co-organizer of Camp Youngblood and shared advocacy initiatives. HACA covers the Northern Virginia region while VABDF covers the rest of Virginia, creating complementary coverage across the region.
• Camp Holiday TrailscoreStrategic or Co-development PartnerYear-round camp for children with medical needs that hosts Camp Youngblood. Provides 24/7 on-site medical care and accessible facilities for children with bleeding disorders.
• VCU Hemophilia Treatment Center (VCU-HTC)coreStrategic or Co-development PartnerCentral Virginia Center for Coagulation Disorders at VCU provides comprehensive care and partners on events, scholarships, and community programs.
• UVA Hemophilia Treatment Center (UVA-HTC)coreStrategic or Co-development PartnerUVA-HTC provides pediatric dietitian and comprehensive care services, partnering on educational programs and community events.
• BayerminorOthersCorporate sponsor for Fall Community Education Weekend and Camp Youngblood programs.
• CSL BehringminorOthersPremier/corporate sponsor for community education events and programs.
• GenentechminorOthersPremier sponsor for education programs and community events.
• Novo NordiskminorOthersCorporate sponsor for community education events and advocacy summits.
• TakedaminorOthersCorporate sponsor for education programs, scholarships, and community events.
• MedexusminorOthersCorporate sponsor for education programs and annual meetings.
• CVS Specialty PharmacyminorOthersSponsor for community events including TopGolf gatherings.
• BioMatrixminorOthersCorporate sponsor for education weekend events.
• Colburn-Keenan FoundationminorOthersFamily Fun Connections Sponsor supporting community events.
• National Bleeding Disorders Foundation (NBDF)coreStrategic or Co-development PartnerNational parent organization providing advocacy support, educational resources, Bleeding Disorders Conference, and Washington Days programs.
• Hemophilia Federation of America (HFA)minorStrategic or Co-development PartnerNational advocacy organization providing resources and organizing community calls.

Scale indicators2 records

Recent moves6 records

Expansion highlights4 records

Broad incumbents

• Cystic Fibrosis Foundation: Large-disease voluntary health organization with similar functions - fundraising, corporate sponsorships from pharma, scholarships, advocacy, and chapter-based service delivery - at vastly greater scale. Useful peer for understanding the potential upside of organizational growth along similar lines.
• National Multiple Sclerosis Society: Large voluntary health organization running education programs, financial assistance, advocacy, scholarships, and local chapter delivery for the MS community. Comparable operating model and donor-constituent structure to VABDF's approach, scaled up.

Others

• Camp Holiday Trails: Year-round medical needs camp that hosts Camp Youngblood and provides 24/7 on-site medical care and accessible facilities for VABDF's camp program. A direct operational partner rather than a competitor, but functionally part of the program delivery stack.

Direct peers

• National Bleeding Disorders Foundation (NBDF): NBDF is the national umbrella organization for bleeding disorders chapters nationwide, including VABDF. It runs the Bleeding Disorders Conference and Washington Days program that VABDF issues travel grants for, and serves as the parent advocacy body for chapters like VABDF. Direct peer in mission, programs, and donor base.
• Hemophilia Federation of America (HFA): HFA is a national bleeding disorders advocacy and support organization that provides resources and community calls complementing NBDF. It overlaps directly with VABDF's mission of serving inherited bleeding disorder communities through education and advocacy.
• Pacific Northwest Bleeding Disorders: State-level chapter serving Oregon and Washington with education, advocacy, summer camp, and family support - the same integrated service model as VABDF, making it one of the closest functional peers.
• Arizona Bleeding Disorders Foundation: State bleeding disorders chapter in Arizona providing education, advocacy, scholarships, and Camp program services - directly comparable to VABDF's service offerings and small-staff nonprofit structure.
• Hemophilia Foundation of Michigan: Michigan's state bleeding disorders chapter running education programs, summer camp, advocacy, and family financial assistance - a one-to-one functional analogue to VABDF's program portfolio with a longer operating history and larger state population.
• Lone Star Bleeding Disorders Foundation (Texas): Texas's state-level bleeding disorders chapter offering education, advocacy, scholarships, and camp programs using the same chapter model as VABDF. Closely comparable in mission, programs (camp, education weekend, financial assistance), and donor/sponsor structure.

Regional players

• Hemophilia Association of the Capital Area (HACA): HACA serves the Northern Virginia / DC metro jurisdictions that VABDF explicitly excludes, and the two organizations co-organize Camp Youngblood and share advocacy initiatives. They are direct regional complements to VABDF rather than competitors, but they are the single most comparable organization by mission and constituents.

Market position

Strengths5 records

Weaknesses4 records

Competitive moat3 records

Key risks6 records

Key highlights8 records

Customer concentration

• YouTubeyoutube.com/@virginiahemophiliafoundati3536
• Facebookfacebook.com/vahemophilia.org
• LinkedInlinkedin.com/company/virginia-hemophilia-foundation
• Instagraminstagram.com/virginiahemophiliafoundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Virginia Hemophilia Foundation