The Coalition for Hemophilia B

What The Coalition for Hemophilia B does

The Coalition for Hemophilia B, Inc. is a 501(c)(3) national nonprofit organization founded in 1989 and headquartered at 880 Third Avenue, New York City. It serves individuals with hemophilia B, a rare bleeding disorder, and their families throughout the United States through education, advocacy, financial assistance, and community programming. Membership is free, and the organization is funded by donations, corporate contributions, and foundation grants.

The organization's core service offerings are a suite of community programs and digital platforms rather than a singular technology product. B-Hub (connect.hemob.org) is the online community platform aggregating members, resources, and events; the Boundless B podcast covers advocacy, treatment, and mental health topics; the Hemophilia B News Magazine is a quarterly publication; and the BCares Emergency Assistance Fund provides direct financial relief. Additional programs include the Beats Music Program, biannual men's and women's retreats, the Gen IX leadership/mentorship initiative, scholarships, and regional "Meetings on the Road" events. The organization's go-to-market is community-led: free membership enrollment through the website, grassroots engagement via content marketing, newsletters, social media, and the Annual Symposium (the 2023 Orlando event drew 800+ in-person and 120+ virtual attendees). The Coalition is not a technology company and does not generate revenue from member fees; it monetizes impact through philanthropic donations and sustains operating scale through 35+ years of program continuity and strategic partnerships with the National Bleeding Disorders Foundation (through MASAC), the American Plasma Users Coalition (APLUS), Pfizer's Rare Disease Advocacy Collaborative, and the World Federation of Hemophilia.

Name

The Coalition for Hemophilia B

Legal name

The Coalition for Hemophilia B, Inc.

Website

https://hemob.org

Company type

Private

Founded year

1989

Operating status

Operating

Headcount range

11–50 employees

Short description

The Coalition for Hemophilia B is a 501(c)(3) national nonprofit founded in 1989 that serves individuals with hemophilia B and their families across the United States through free membership, education, advocacy, financial assistance, and community programs including the B-Hub platform, podcast, retreats, and annual symposium.

Ownership category

akta.pro rank

Headquarters

HQ city

New York

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 Contributions: The Coalition for Hemophilia B is a nonprofit organization that relies on donations from individuals, corporations, and foundations to fund its programs and operations. Donations support patient programming, education, financial assistance, and advocacy efforts nationwide.
2. Membership: Free membership is offered to patients and families, providing access to quarterly Hemophilia B News Publication, patient and travel assistance grants, and other member benefits.

Pricing tiers

Go-to-market motion1 record

Distribution channels3 records

Marketing channels6 records

Core offering

The Coalition for Hemophilia B is a national nonprofit that delivers free membership, educational programming, peer community support, financial assistance, and policy advocacy to individuals with hemophilia B and their families across the United States. Its core offerings include the B-Hub online community platform, the quarterly Hemophilia B News Magazine, the Boundless B podcast, the BCares Emergency Assistance Fund, biannual men's and women's retreats, the Gen IX leadership/mentorship program, and the Annual Symposium.

Product overview

The Coalition for Hemophilia B offers a suite of community-focused programs and services rather than a traditional technology product. The core offerings include the B-Hub online community platform, the Boundless B Podcast, and the Hemophilia B News Magazine quarterly publication. Additional programs include financial assistance (BCares), music programming (Beats Music Program), recreational activities (Let's Play IX Golf Event), retreat programs for men and women, and the Gen IX leadership/mentorship program. The organization also maintains a Resource Library with educational content. These programs work together to provide education, empowerment, advocacy, and outreach to the hemophilia B community through both digital platforms and in-person events.

Differentiator

Problem solved

Functional benefit

Brands

• Boundless B: The Hemophilia B Podcast: The organization's podcast featuring episodes on advocacy, treatment, mental health, and community stories related to hemophilia B.
• B-Hub
• B Voice Advocacy
• Beats Music Program
• BCares Emergency Assistance Fund

Products and services

• Free Membership Program Free membership program that provides individuals with hemophilia B and their families access to the quarterly Hemophilia B News Magazine, eligibility for patient and travel assistance grants, and member-exclusive programming.

Quantifiable outcome

• Over 800 attendees at the 2023 Annual Symposium representing nearly every U.S. state plus international participants
• +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

Five partnerships are on record, tiered major, core and minor.

• Pfizer (Rare Disease Advocacy Collaborative)majorGTM or Marketing Partner · 1 December 2024The Coalition attended Pfizer's Rare Disease Advocacy Collaborative meeting alongside other major rare disease advocacy groups including NORD, Every Life Foundation, Global Genes, NBDF, HFA, and sickle cell and amyloidosis communities. Discussed health policy, gene therapy access, and Medicaid issues.
• APLUS (American Plasma Users Coalition)coreStrategic or Co-development PartnerThe Coalition for Hemophilia B is part of APLUS, a group of organizations representing patients who use plasma-derived therapies. Together they work to keep plasma-derived therapies safe and accessible and to create awareness about the importance of donating plasma.
• National Bleeding Disorders Foundation (NBDF)coreStrategic or Co-development PartnerThrough MASAC (Medical and Scientific Advisory Council), the Coalition works with NBDF on treatment guidelines and recommendations for the bleeding disorders community. MASAC issues recommendations on treatment, research, and general health concerns.
• BiomatrixminorGTM or Marketing PartnerPartnership featured through Biomatrix, a specialty pharmacy and healthcare solutions company serving the bleeding disorders community.
• World Federation of Hemophilia (WFH)coreStrategic or Co-development PartnerThe Coalition follows and shares WFH guidance including COVID-19 vaccination guidance for people with bleeding disorders and the WFH Gene Therapy Registry.

Scale indicators3 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• American Plasma Users Coalition (APLUS): APLUS is a coalition of patient organizations that depend on plasma-derived therapies. The Coalition for Hemophilia B is a member of APLUS, making it a direct coalition-style peer around plasma access and therapy safety advocacy.
• Hemophilia Federation of America (HFA): HFA is a national nonprofit serving people with hemophilia and other bleeding disorders across the U.S. It runs advocacy, education, and community programs targeted at the same patient and family demographic as the Coalition for Hemophilia B.
• National Bleeding Disorders Foundation (NBDF): Formerly National Hemophilia Foundation, NBDF is the largest U.S. patient advocacy organization for the bleeding disorders community. It serves the same hemophilia patient population as the Coalition and co-publishes MASAC treatment guidelines, making it the most direct comparable.

Broad incumbents

• Cystic Fibrosis Foundation: The Cystic Fibrosis Foundation is a benchmark rare disease patient advocacy organization with a comprehensive research, advocacy, and community engagement model. While focused on a different disease, it represents the gold-standard scale and operational model the Coalition's program portfolio mirrors.
• National Organization for Rare Disorders (NORD): NORD is the established umbrella advocacy organization for the rare disease community in the U.S. The Coalition has co-participated with NORD in Pfizer's Rare Disease Advocacy Collaborative, highlighting an overlapping rare disease advocacy mission.
• World Federation of Hemophilia (WFH): WFH is a global umbrella organization for the hemophilia community that the Coalition partners with on shared guidance and registries. It addresses a broader geographic and disease scope but serves the same patient population at an international level.

Emerging players

• EveryLife Foundation for Rare Diseases: EveryLife Foundation is a rare disease advocacy organization that participated alongside the Coalition in Pfizer's Rare Disease Advocacy Collaborative. It has a broader portfolio of rare disease policy initiatives but addresses an overlapping patient advocacy mission.
• Sickle Cell Disease Association of America (SCDAA): SCDAA is a national patient advocacy organization for sickle cell disease. It co-participated with the Coalition in Pfizer's Rare Disease Advocacy Collaborative and serves a similar under-recognized rare disease patient population with parallel advocacy and education needs.
• Alpha-1 Foundation: Alpha-1 Foundation is a rare disease patient advocacy organization focused on Alpha-1 antitrypsin deficiency. It runs similar research funding, education, advocacy, and community programs targeted at a comparable rare disease patient population.
• Global Genes: Global Genes is a rare disease patient advocacy organization that has partnered with the Coalition in Pfizer's Rare Disease Advocacy Collaborative. It focuses on empowering rare disease communities with similar education, advocacy, and connection programming.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• LinkedInlinkedin.com/company/coalition-for-hemophilia-b

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about The Coalition for Hemophilia B