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HEMOPHILIA ASSOCIATION OF NEW YORK INC
NEW YORK, NY · EIN 135650955 · Form 990 · FY2024 · NTEE G030 · Voluntary Health Associations · Small ($100K-$1M) · hemophiliany.com
revenue
$441K
expenses
$960K
net assets
$4.1M
employees
6
volunteers
15
program ratio
65%
mission · from form 990

FUND CURES FOR HEMOPHILIA AND RELATED CONDITIONS.

profile · synthesized from sources

Hemophilia Association of New York supports scientific research toward treatments and cures for hemophilia and related bleeding disorders, while providing education, advocacy, and direct assistance to affected individuals. The organization funds research grants, offers financial aid and scholarships, and serves the bleeding disorder community across 14 southeastern counties of New York. It also promotes awareness through events, publications, and partnerships.

irs program accomplishments · form 990 part iii · fy2024

What they reported doing

  1. #1 primary $2K
    THE ORGANIZATION SUPPORTS SCIENTIFIC STUDIES AND INVESTIGATIONS AT QUALIFIED INSTITUTIONS TOWARD FINDING ALLEVIATION OF THE MEDICAL PROBLEMS ASSOCIATED WITH HEMOPHILIA AND OTHER BLEEDING DISORDERS AND THEIR COMPLICATIONS. DURING THE FISCAL YEAR 2024-2025, THE ASSOCIATION MADE $986 IN PAYMENTS TOWARD THE RESEARCH GRANT AWARDED IN FY 2022-2023.
  2. #2 $2K
    IN FISCAL YEAR 2024-2025, THE ASSOCATION SUPPORTED BLEEDNG DISORDERS PROFESSIONALS IN ATTENDING NATIONAL MEETINGS. INFORMATION WAS PROVIDED TO THE GENERAL PUBLIC ON BLEEDING DISORDERS.
named programs · 5 · from sources

What they call their work

Albany Days Advocacy
Annual state advocacy initiative promoting bleeding disorders awareness and supporting legislative efforts in New York State.
Financial Assistance Program
Offers direct financial aid to individuals with bleeding disorders for medical treatments, clotting proteins, and emergency expenses not covered by insurance.
HANY Scholarship Program
Provides college scholarships to individuals with bleeding disorders or their children; has awarded over $850,000 since 2001.
Quarterly Newsletter
Educational publication providing updates on treatments, insurance, and management strategies for the bleeding disorder community.
Research Grants Program
Provides funding to qualified institutions for scientific studies aimed at improving treatments and finding cures for hemophilia and related bleeding disorders.
activities · 5 groups

What they do

  • Disease-Specific Clinical & Patient Education 2 activities
    • Distributing educational newsletters and materials to the bleeding disorders community
      Produces and distributes a quarterly electronic newsletter, such as the Hemophilia Outlook, with updates on treatments, insurance, and management of bleeding disorders to patients, researchers, and caregivers.
    • Supporting professional development and public education in bleeding disorders
      Provides support for bleeding disorders professionals to attend national meetings and conducts public education campaigns to increase awareness of bleeding disorders.
  • Bleeding and Blood Disorder Support Services 1 activity
    • Administering college scholarships for individuals with bleeding disorders and their families
      Offers an annual scholarship program for students with bleeding disorders and their children residing in New York State to support higher education.
  • Healthcare Policy Advocacy 1 activity
    • Advocating for bleeding disorders awareness and legislative action
      Co-sponsors legislation recognizing March as Bleeding Disorders Awareness Month in New York State and secures co-sponsorship of bills through advocacy efforts such as Albany Days.
  • Direct Financial Assistance to Individuals 1 activity
    • Providing direct financial assistance for medical treatment and emergencies
      Offers financial aid to individuals with bleeding disorders to cover costs of clotting proteins, medical treatments, and related emergency expenses.
  • Uncategorized 2 activities
    • Funding research on treatments and cures for bleeding disorders
      Provides grants to qualified institutions for scientific studies addressing medical problems associated with hemophilia and related bleeding disorders, including a two-year $200,000 grant and ongoing disbursements totaling over $118,000 in recent fiscal years.
    • Organizing educational events and symposia for medical professionals and the community
      Hosts virtual and in-person educational events, including a symposium on hematology and pregnancy attended by 140 live participants and viewed over 1,000 times, and collaborates with the New York State Bleeding Disorders Coalition to serve the southeastern fourteen counties.
financials · form 990 · fy2024
revenue
Total revenue$441K
Contributions & grants$384K87%
Program service revenue$00%
Investment income$47K11%
Other revenue$10K
expenses
Total expenses$960K
Program expenses65%
Admin / overhead33%
Fundraising2%
Salaries & benefits$503K
Grants paid out$104K
Largest expense lineCompensation
balance sheet
Total assets$4.36M
Cash$151K
Investments$2.06M
Liabilities$224K
Net assets$4.13M
Liquid reserves27.7 mo
6 years on record · 2019–2024 · YoY revenue -80.9%
leadership · form 990 part vii · fy2024

Who runs it

paid leadership · 2
NameTitleHours/wkCompensation
LINDA E MUGFORD EXECUTIVE DIRECTOR-THRU 12/31/24 24 $203K
ELIZABETH CEDENO EXECUTIVE DIRECTOR-BEGINNING 1/1/25 40 $100K
board members · 15
  • ALEJANDRO BAQUERO — TRUSTEE
  • AUREO C PINTO JR — TRUSTEE
  • BRIAN EGAN — TRUSTEE
  • CHRISTOPHER N TOUSSAINT — TRUSTEE
  • EDWARD G ROGOFF PHD — TRUSTEE
  • EILEEN MARGOLIES — TRUSTEE
  • JEFFREY ZACHARIA — TRUSTEE
  • JOANA BAQUERO — TRUSTEE
  • JOSEPH MUGFORD — TRUSTEE
  • MAGGI PACK — TRUSTEE
  • MARIAM VOUTSIS — CHAIRMAN OF THE BOARD
  • MARK K SVENNINGSON — TRUSTEE
  • MARK KOVARIK — TRUSTEE
  • ROBERT M GREER — TRUSTEE
  • THEODORE BUNIN — TRUSTEE
relationships · 27

Who they work with

  • Albany Regional Comprehensive HTC (Albany Med) Partner — Collaborates to provide pediatric hemophilia and von Willebrand disease care in Albany, NY
  • Assemblyman Conrad Partner — Co-sponsored recognition of March as Bleeding Disorders Awareness Month in New York State.
  • Bleeding Disorders Advocacy Network Network — State advocacy organization collaborating with HANY to serve the bleeding disorder community.
  • Bleeding Disorders Association of the Southern Tier Network — Regional advocacy organization collaborating with HANY to serve the bleeding disorder community.
  • Edward Rogoff Partner — Author and board member who contributes expertise and lived experience to support the organization's mission.
  • Facebook Partner — Uses Facebook as a platform for outreach and engagement.
  • Instagram Partner — Uses Instagram to connect with the community.
  • LinkedIn Partner — Uses LinkedIn for professional networking and organizational updates.
  • Mary M. Gooley Hemophilia Center, Inc. Network — State advocacy organization collaborating with HANY to serve the bleeding disorder community.
  • Montefiore Hemophilia Treatment Center Partner — Collaborates to provide hemophilia treatment services in the Bronx, NY
  • Mount Sinai Hemophilia Treatment Center Partner — Collaborates to provide hemophilia treatment services in Manhattan, NY
  • New York City Hemophilia Chapter Network — State advocacy organization collaborating with HANY to serve the bleeding disorder community.
  • New York State Bleeding Disorder Coalition Partner — Partnership to expand advocacy efforts and raise awareness for people with bleeding disorders.
  • New York State Bleeding Disorders Coalition Coalition — Proud member of the coalition advocating for people with bleeding disorders in New York State.
  • New York State Bleeding Disorders Coalition Partner — Collaborates on delivering educational events and resources for the bleeding disorder community.
  • New York State Bleeding Disorders Coalition (NYSBDC) Partner — Jointly championed two bills during Albany Days advocacy efforts.
  • New York-Presbyterian / Weill Cornell HTC Partner — Collaborates to provide hemophilia treatment services in Manhattan, NY
  • Northwell Health Hemostasis & Thrombosis Center Partner — Collaborates to provide hemophilia treatment services in New Hyde Park, NY
  • Senator Joseph P. Addabbo Jr. Partner — Co-sponsored recognition of March as Bleeding Disorders Awareness Month and two advocacy bills during Albany Days.
  • The Bleeding Disorders Association of Northeastern New York Network — Regional advocacy organization collaborating with HANY to serve the bleeding disorder community.
  • The Hemophilia Association of New York Network — Trusted partner of the bleeding disorders community in New York.
  • Twitter Partner — Uses Twitter for communication and awareness.
  • University of Colorado Partner — Funded a research project on microfluidic devices to predict bleeding in von Willebrand's disease.
  • WNY Bloodcare Network — State advocacy organization collaborating with HANY to serve the bleeding disorder community.
  • healthcare professionals Partner — Collaborates with healthcare professionals in research and treatment advancement for bleeding disorders.
  • healthcare professionals Partner — Collaborates with healthcare professionals through research grants and information sharing to advance treatment for hemophilia.
  • multiple New York hemophilia advocacy groups Partner — Collaborates with multiple hemophilia advocacy groups across New York to expand reach and support.
strategies · 5

How they approach the work

Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.

  • Advocacy Through Coalition and Storytelling
    methodology: coalition-based advocacy
    By leveraging personal narratives and building coalitions with state and regional advocacy groups, the organization increases awareness and expands access to care because collective voices and lived experiences drive policy change and resource allocation more effectively than isolated efforts.
  • Education as Empowerment
    methodology: patient-education-empowerment
    By providing timely, accessible education and updated treatment information, the organization empowers individuals with hemophilia to become self-advocates because knowledge reduces fear and enables informed healthcare decision-making.
  • Financial Access as a Clinical Enabler
    methodology: financial_assistance_for_access_to_care
    By providing financial assistance to individuals with bleeding disorders, the organization ensures equitable access to care because removing economic barriers directly increases treatment adherence and health outcomes.
  • Integrated Support Model
    methodology: integrated_support_model
    By combining direct assistance, education, advocacy, and research support into a single framework, the organization improves health outcomes for individuals with bleeding disorders because addressing medical, psychosocial, and systemic barriers holistically leads to more sustainable and equitable care engagement.
  • Research-Focused Pathway to Cures
    methodology: cure-focused_research_funding
    By funding targeted research and supporting external scientific inquiry, the organization advances progress toward cures for bleeding disorders because sustained investment in science translates into clinical breakthroughs and long-term disease modification.