New York City Hemophilia Chapter

What New York City Hemophilia Chapter does

The New York City Hemophilia Chapter (NYCHC) is a 501(c)(3) nonprofit organization founded in 2008 and headquartered in New York City that serves individuals and families affected by hemophilia, Von Willebrand Disease, and other rare bleeding disorders across the greater New York City metropolitan area. Its mission is delivered through a portfolio of community programs including the annual Unite Walk and Tee Up For A Cure Golf Tournament for fundraising, the TORCH Teen Retreat and PULSE for Bleeders teen leadership program, Education Day, the Women's Retreat, the VWD Program, the Inhibitors Program, Unidos por la Sangre (Latino outreach), the Connections mentorship program, Dads in Action, and recurring advocacy initiatives (Albany Days and Washington Days). Complementary resources include mental health referrals, financial assistance, scholarships, insurance guidance, a quarterly Bleeding Times newsletter, and text alerts. The organization is a chapter of the National Bleeding Disorders Foundation (NBDF) and a member of the Hemophilia Federation of America (HFA), and partners clinically with major regional Hemophilia Treatment Centers (Mount Sinai, Weill Cornell/NY Presbyterian, Montefiore, Northwell Health) and corporately with pharmaceutical sponsors including Novo Nordisk and Octapharma. NYCHC has no proprietary technology platform; outreach is delivered through a multilingual website (11 languages), email, social media, text alerts, and nine specialized volunteer committees. The organization's 2006 founder-led NYC Walk inspired the national Unite Walk program that now spans more than 40 chapters.

NYCHC's business model is that of a community-servicing nonprofit: all programs are provided free of charge to participants, and operating costs are covered by individual donations (online and mail), annual fundraising events (Unite Walk, Golf Tournament, Educational Lunches, Retreats), corporate sponsorships, and planned giving/bequest programs. Golf tournament pricing is disclosed at $2,000 for a foursome, $500 per individual golfer, and $250 for dinner-only, with sponsorship tiers ranging from $250 to $15,000. Operating governance rests with a Board of Directors (President Erin Cirelli, Vice President Samuel Eglow, Treasurer Mike Gulbin) and a small staff led by Executive Director Jeremy Griffin, who joined from the National Hemophilia Foundation. Day-to-day operations are supported by a Latino Community Coordinator, a shared Senior Manager of Marketing and Communications (also serving NEHA), and a Digital Marketing and Social Media Specialist.

Name

New York City Hemophilia Chapter

Legal name

New York City Hemophilia Chapter

Website

https://nyhemophilia.org

Company type

Private

Founded year

2008

Operating status

Operating

Headcount range

1–10 employees

Short description

New York City Hemophilia Chapter is a 501(c)(3) nonprofit serving individuals and families affected by hemophilia, Von Willebrand Disease, and other bleeding disorders in the greater NYC area through free community programs, education, advocacy, and direct support services funded by donations and sponsorships.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Community Health Nonprofits

NAICS

Other Individual and Family Services (624190)

SIC

Services-Social Services (8300), Services-Membership Organizations (8600)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• Patient advocacy services
• Community health support
• Nonprofit health education
• Bleeding disorders awareness
• Charitable fundraising events

Headquarters

HQ city

New York

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales

Revenue model

1. Donations and Fundraising: NYCHC raises funds through individual donations (online and by mail), annual fundraising events including the Unite for Bleeding Disorders Walk and the Tee Up For A Cure Golf Tournament, corporate sponsorships, and planned giving/bequest programs. The majority of programs are provided free of charge to community members, supported by these financial contributions.

Pricing tiers

Go-to-market motion1 record

Distribution channels3 records

Marketing channels7 records

Core offering

NYCHC is a 501(c)(3) nonprofit patient advocacy and community support organization that provides free education, information, peer support, and advocacy programs for individuals and families affected by hemophilia, Von Willebrand Disease, and other rare bleeding disorders in the greater New York City area. The organization delivers its core offering through annual fundraising events (Unite Walk, Golf Tournament), educational events (Education Day, Innovation Summit, Women's Retreat), teen programming (TORCH, PULSE for Bleeders), community-specific outreach (Unidos por la Sangre for Latino families, VWD Program, Inhibitors Program, Dads in Action), advocacy initiatives (Albany Days, Washington Days), and a Connections Program for newly diagnosed families.

Product overview

New York City Hemophilia Chapter (NYCHC) offers a unified suite of community programs and resources for people affected by bleeding disorders in the greater NYC area. The organization provides direct service programs including the annual Unite Walk and Golf Tournament for fundraising, teen programs (TORCH Retreat, PULSE for Bleeders), community-specific outreach (Unidos por la Sangre for Latino community, VWD Program, Inhibitors Program), educational events (Education Day, Innovation Summit, Women's Retreat), advocacy initiatives (Albany Days, Washington Days), and support services (Connections Program, Dads in Action). Resource offerings include mental health resources, financial assistance, scholarships, insurance guidance, newsletters (Bleeding Times), and text alert communications. These programs work together to foster community, improve health outcomes, and enhance quality of life for individuals and families affected by hemophilia, Von Willebrand Disease, and rare bleeding disorders.

Differentiator

Problem solved

Functional benefit

Products and services

• Unite Walk Annual fundraising walk event that brings together people affected by bleeding disorders to raise funds and awareness for the NYC bleeding disorders community.
• Golf Tournament (Tee Up For A Cure) Annual charity golf outing providing crucial funding to support NYCHC's mission to find better treatments and cures for bleeding disorders.
• TORCH Teen Retreat Teen Opportunities and Resources for Community Health program for teens ages 13-18 that fosters independence, self-advocacy, support, and leadership skills.
• PULSE for Bleeders Teen group (Promoting Unity, Leadership, and Support for Empowerment) designed by and for teens to empower independence and cultivate leadership skills.
• Unidos por la Sangre Latino outreach program run by the Latino Outreach Committee for Spanish-speaking bleeders and their families.
• Education Day Event that brings the entire bleeding disorders community together to learn, grow, connect, and have fun.
• Women's Retreat Weekend-long retreat featuring educational sessions, social activities, health and wellness workshops, and networking for women with bleeding disorders.
• Advocacy Program Public advocacy initiatives including Albany Days and Washington Days, working with the New York State Bleeding Disorders Coalition.
• Innovation Summit (In The Know) Educational event helping community members learn about treatment options for bleeding disorders.
• Connections Program Program that matches families and individuals who are new to hemophilia, new to New York City, or new to the Chapter with experienced community members.
• VWD Program Program focused on Von Willebrand Disease, the most common bleeding disorder, serving the estimated 80,000 New Yorkers living with VWD.
• Inhibitors Program Support and resources for patients, caregivers, and support network members dealing with the added complication of an inhibitor.
• Dads in Action Program of the Hemophilia Federation of America offering support and education to fathers who have a bleeding disorder in their family.
• Insurance and Reimbursement Resources Resources to help individuals understand health insurance options, including NHF's HANDI, insurance toolkits, and assistance programs.
• Financial Assistance Scholarships and financial reimbursements for emergency financial assistance and travel to educational meetings and advocacy events.
• Scholarships Educational scholarships available to individuals with bleeding disorders, including B More Scholarship, Lawrence Madeiros Scholarship Fund, and HFA scholarships.
• Bleeding Times Newsletter Quarterly newsletter providing news, updates, and educational content for the bleeding disorders community.

Quantifiable outcome

• The first NYC Walk in 2006 attracted 200 participants and raised $12,000, growing to inspire the national Unite Walk program now spanning 40+ chapters.
• +1 more outcomes

Named customers5 records

Segments6 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Seven partnerships are on record, tiered core and minor.

• National Bleeding Disorders Foundation (NBDF)coreStrategic or Co-development PartnerNYCHC is a Chapter of the National Bleeding Disorders Foundation (NBDF). As a chapter, NYCHC participates in national advocacy initiatives including Washington Days, aligns with NBDF's educational programming, and contributes to the broader national bleeding disorders community.
• Hemophilia Federation of America (HFA)coreStrategic or Co-development PartnerNYCHC is a member organization of the Hemophilia Federation of America (HFA), participating in HFA's programs including the Dads in Action program and the HFA Educational Scholarship program, and aligning with national HFA advocacy efforts.
• Hemophilia Treatment Centers (HTCs)coreStrategic or Co-development PartnerNYCHC works closely with local Hemophilia Treatment Centers in the greater NYC area including Mount Sinai, Weill Cornell/NY Presbyterian, Montefiore, and Northwell Health. The chapter refers newly diagnosed families to HTCs, collaborates on educational programming, and maintains ongoing partnerships for patient care coordination.
• New York State Bleeding Disorders CoalitioncoreStrategic or Co-development PartnerNYCHC is a member organization of the New York State Bleeding Disorders Coalition, a partnership of not-for-profit organizations dedicated to public advocacy on behalf of people affected by bleeding disorders in New York State. The Coalition includes patient-consumer community organizations and HTCs serving New York State.
• Novo NordiskminorGTM or Marketing PartnerNovo Nordisk sponsors NYCHC educational events including educational lunch sessions on treatment options for hemophilia A or B (Alhemo).
• OctapharmaminorGTM or Marketing PartnerOctapharma sponsors the Tee Up For A Cure Hemophilia Charity Golf Outing event as a Cart Sponsor.
• Hemophilia Association of New York (HANY)minorStrategic or Co-development PartnerNYCHC is a separate chapter from the Hemophilia Association of New York (HANY), but both organizations serve the broader New York bleeding disorders community. HANY offers reimbursement counseling and premium/co-payment assistance.

Scale indicators6 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• National Organization for Rare Disorders (NORD): The umbrella rare-disease advocacy organization. Operates at the broader disease category level that encompasses hemophilia; NORD-style infrastructure (advocacy days, patient assistance) directly mirrors NYCHC's operating playbook.
• National Bleeding Disorders Foundation (NBDF): NYCHC is a Chapter of NBDF. NBDF operates nationally with research, advocacy, and education programs; NYCHC executes the local ground game that NBDF's national model relies on.
• Hemophilia Federation of America (HFA): NYCHC is a member organization of HFA. HFA runs nationwide programs like Dads in Action and HFA Educational Scholarship, which NYCHC participates in and routes community members to.

Regional players

• Hemophilia Association of New Jersey: An adjacent-state bleeding disorders chapter; the NYCHC Board President previously served on its board and ran a Walk there. Same disease mission, same organizational template, but a different geographic territory.

Direct peers

• Cancer Support Community: A national nonprofit delivering in-person community/education programs and virtual support for people affected by a specific disease; highly analogous to NYCHC's retreat, education day, and peer-mentorship model for a different condition.
• Alpha-1 Foundation: A disease-specific nonprofit that similarly provides community education, advocacy, and research support for a rare chronic condition. Direct comparability in funding model (events, individual giving, pharma grants) and constituency engagement.
• New England Hemophilia Association (NEHA): NEHA is the NE chapter of the same national network; NYCHC and NEHA share a Marketing & Communications Manager as their first inter-chapter shared employee, indicating tight operational alignment on the bleeding-disorders chapter model.
• Hemophilia Association of New York (HANY): Operates in the same broader New York bleeding disorders community as NYCHC with overlapping services including reimbursement counseling and premium/co-pay assistance. The two are explicitly described as separate organizations serving the same regional population.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/NYCHemophilia
• Facebookfacebook.com/NYCHemophiliaChapter
• LinkedInlinkedin.com/company/new-york-city-hemophilia-chapter

Revenue estimate

Valuation estimate

Number of profiles

Profiles12 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about New York City Hemophilia Chapter