irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $6KTHE BDANENY CONTINUALLY COLLABORATES WITH HEMOPHILIA TREATMENT CENTERS, OTHER AGENCIES, MEDICAL PROFESSIONALS AND OTHER CHAPTERS TO PROVIDE PROGRAMS AND SERVICES UNIQUE TO THOSE WITH BLEEDING DISORDERS TO BEST MEET THEIR NEEDS.
- #2 $1KTHE BDANENY OFFERS SCHOLARSHIPS TO HIGH SCHOOL AND COLLEGE AGED STUDENTS TO ENCOURAGE THEIR CONTINUED EDUCATION. THE ASSOCIATION OFFERS EMERGENCY ASSISTANCE TO MEMBERS OF OUR COMMUNITY. AS PART OF OUR MISSION WE HELP FUND RESEARCH BECAUSE WHILE THERE ARE TREATMENTS FOR BLEEDING DISORDERS THERE IS NO CURE.
named programs · 5 · from sources
What they call their work
Advocacy Initiatives
Engages in local and federal advocacy efforts, including support for legislation like Bill A.7129/S.6435a to improve prior authorization processes and the HELP Copays Act to ensure copay assistance counts toward out-of-pocket maximums
Educational Outreach & Events
Hosts educational events, such as dinners and newsletters, to inform the community about advances in hemophilia treatment and research
Emergency Assistance (BDA Cares Grant)
Provides emergency financial aid to community members for living expenses not covered by insurance, such as after a house fire
HTC Mileage Reimbursement
Provides reimbursement for round-trip travel expenses for patients and families attending scheduled visits at the Albany Medical Center Hemophilia Treatment Center
Scholarship Program
Offers financial awards to high school and college-aged students with bleeding disorders to support continued education
activities · 6 groups
What they do
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Bleeding and Blood Disorder Support Services 2 activities
- Community education and outreach eventsHosts educational and outreach events, including an annual dinner on hemophilia treatment updates and other community engagement activities, to inform and support individuals affected by bleeding disorders.
- Direct support services for individuals with bleeding disordersProvides services, referrals, treatment information, and self-advocacy support to individuals and families affected by genetic bleeding disorders such as hemophilia and von Willebrand disease across 22 counties in New York State. Operates through collaboration with hemophilia treatment centers, medical professionals, and partner organizations.
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Organizational Newsletter Production and Distribution 1 activity
- Community information disseminationDistributes a quarterly email newsletter to keep the bleeding disorders community informed about condition-related updates, local opportunities, and organizational news.
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Direct Financial Assistance to Individuals 1 activity
- Emergency and financial assistance programsOffers emergency financial aid to members of the bleeding disorders community, including grocery gift cards, living expense payments, and BDA Cares Grants. Also provides scholarships to high school and college-aged students affected by bleeding disorders to support their education.
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Genetic and Neurological Disease Research Funding 1 activity
- Funding research on bleeding disordersSupports research initiatives aimed at advancing treatments and finding a cure for bleeding disorders through targeted funding and collaboration.
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Non-Emergency Medical & Essential Transportation 1 activity
- Mileage reimbursement for medical visitsReimburses round-trip mileage expenses for patients and families traveling to Hemophilia Treatment Center (HTC) services at Albany Medical Center, facilitating access to specialized care.
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Healthcare Policy Advocacy 1 activity
- State and local advocacy for bleeding disorders policyEngages in advocacy efforts to advance legislative and regulatory changes affecting the bleeding disorders community, including co-organizing advocacy events in Albany and supporting the passage of Bill A.7129 / S.6435a to standardize prior authorization guidelines. Participates in the BDA Chapter Coalition to influence health policy at the state level.
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financials · form 990 · fy2024
revenue
Total revenue$85K
Contributions & grants$25K29%
Program service revenue$55K65%
Investment income$2K3%
Other revenue$3K
expenses
Total expenses$107K
Program expenses11%
Admin / overhead89%
Fundraising0%
Salaries & benefits$76K
Grants paid out$0
Largest expense lineCompensation
balance sheet
Total assets$128K
Cash$17K
Investments$0
Liabilities$0
Net assets$128K
Liquid reserves1.9 mo
5 years on record · 2019–2024 · YoY revenue -4.6%
leadership · form 990 part vii · fy2024
Who runs it
board members · 4
- JESSICA SMITH — BOARD MEMBER
- LINDA PEACOCK — BOARD MEMBER
- MARYANNE CHECCHETTO — BOARD MEMBER
- PATRICIA MARCK — BOARD MEMBER
relationships · 23
Who they work with
- Albany Medical Center Partner — Collaborates with BDANENY to provide Hemophilia Treatment Center services and confirm patient visit attendance for reimbursement.
- Albany Medical Hemophilia Treatment Center Partner — Collaborates with BDANENY to provide treatment options and community resources for patients and families affected by bleeding disorders
- BDA Chapter Coalition Coalition — Participates in advocacy efforts through the BDA Chapter Coalition.
- Barbara Lee Partner — Co-sponsor of the HELP Copays Act
- Bill A.7129 (Gottfried) Partner — Legislative bill supported by the organization to reform prior authorization practices.
- Bobby Rush Partner — Co-sponsor of the HELP Copays Act
- Bonnie Watson Coleman Partner — Co-sponsor of the HELP Copays Act
- Brian Fitzpatrick Partner — Co-sponsor of the HELP Copays Act
- Buddy Carter Partner — Co-sponsor of the HELP Copays Act
- Canadian Hemophilia Society Network — BDANENY shares resources and information with the Canadian Hemophilia Society on diagnosis, treatment, and management of bleeding disorders
- Donald McEachin Partner — Co-sponsor of the HELP Copays Act
- Hemophilia Federation of America Network — BDANENY is part of a national network supported by HFA, which advocates for safe, affordable, and accessible blood products and health coverage for people with bleeding disorders
- Hemophilia Treatment Centers Partner — Collaborates with hemophilia treatment centers to provide programs and services for individuals with bleeding disorders.
- Marc Veasey Partner — Co-sponsor of the HELP Copays Act
- NYSBDC Partner — Collaborates with NYSBDC on advocacy initiatives, including Albany Days.
- National Hemophilia Foundation Network — Formerly operated as the Upper Hudson Valley Chapter of the National Hemophilia Foundation, Inc.
- National Hemophilia Foundation Network — Formerly operated as the Upper Hudson Valley Chapter of the National Hemophilia Foundation.
- National Hemophilia Foundation, Inc. Network — BDANENY aligns with NHF to access information, advocacy, research initiatives, and educational resources related to bleeding disorders
- Pfizer Partner — Sponsors a dinner event hosted by the organization.
- Rodney Davis Partner — Co-sponsor of the HELP Copays Act
- S.6435a (Breslin) Partner — Legislative bill supported by the organization to reform prior authorization practices.
- World Federation of Hemophilia Network — BDANENY is connected to the global bleeding disorders community through affiliation with the World Federation of Hemophilia
- Yvette Clarke Partner — Co-sponsor of the HELP Copays Act
strategies · 4
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.
- Coalition-Based Policy Advocacymethodology: coalition-based advocacyBy organizing with partner organizations and chronic care communities, we advance systemic policy changes—such as prior authorization and copay accumulator reform—because collective advocacy amplifies patient voices and drives equitable, sustainable health administration practices.
- Collaborative Service Delivery Networkmethodology: collaborative_service_deliveryBy partnering with hemophilia treatment centers and medical professionals, we extend the reach and quality of specialized services, because collaboration ensures patients receive comprehensive, clinically-informed support aligned with medical best practices.
- Education and Advocacy to Improve Quality of Lifemethodology: education_and_advocacyBy combining education and advocacy, we improve health outcomes and quality of life for individuals and families affected by bleeding disorders, because informed patients are better equipped to manage their condition and engage effectively with the healthcare system.
- Reducing Financial and Logistical Barriers to Caremethodology: financial-barrier-reductionBy providing direct financial assistance and mileage reimbursement, we increase access to specialized care and treatment adherence, because reducing out-of-pocket costs and travel burdens enables consistent engagement with essential medical services.