named programs · 4 · from sources
What they call their work
APS Type 1 Registry
Secure web-based registry collecting longitudinal data on diagnosis, treatments, symptoms, and quality of life from patients with APS Type 1 to support research.
Foundation-Funded Research Program
Provides competitive research grants in partnership with NORD to advance understanding and treatment of APS Type 1.
Global Scientific Summit
Gathers leading scientists and clinicians from North America and Europe to accelerate collaborative research toward a cure.
International Symposium on APS Type 1
Biennial gathering connecting patients, families, and researchers to share updates on research, clinical care, and patient support strategies.
activities · 7 groups
What they do
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Rare Genetic Disease Research and Advocacy 3 activities
- Building global research capacity for APS Type 1Develops strategic resources such as a global database of doctors and scientists working on APS Type 1 and provides guidance for international symposia and research initiatives to strengthen the global research network.
- Operating the APS Type 1 (APECED) RegistryManages a secure, web-based patient registry that collects longitudinal data on diagnosis, prognosis, treatments, comorbidities, medications, hospitalizations, and quality of life for individuals with APS Type 1. The registry has enrolled 125 patients to date and supports IRB-approved clinical research.
- Partnering with rare disease advocacy organizationsCollaborates with Raregivers™ to support individuals and families affected by rare diseases, including APS Type 1, through shared advocacy and support initiatives.
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Biomedical Research and Innovation 1 activity
- Conducting clinical research on APS Type 1Conducts IRB-approved clinical research to understand the mechanisms of autoimmunity and fungal susceptibility in APS Type 1/APECED, with the goal of improving diagnostic and therapeutic strategies.
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Organizational Newsletter Production and Distribution 1 activity
- Distributing community and research updates via newsletterProduces and distributes a regular newsletter to share updates on APS Type 1 research, upcoming events, community news, and volunteer opportunities.
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Autoimmune Disease Research Funding 1 activity
- Funding research on APS Type 1Awards grants to support research initiatives focused on APS Type 1, including a partnership with NORD through which 8 research grants totaling over $550,000 were awarded.
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Patient and Researcher Conferences 1 activity
- Hosting international and virtual scientific and family symposiaOrganizes international and virtual gatherings, including the Inaugural Global Scientific Summit in 2022, multiple international symposia, and family-focused events such as the 2019 symposium in National Harbor, Maryland, to connect researchers, clinicians, patients, and families.
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Charity Event Organization 1 activity
- Organizing fundraising events for APS Type 1 researchHosts community fundraising events including "Slam Dunks for Sam" basketball events, benefit concerts, and the APS Type 1 Basket raffle, raising over $100,000 for research.
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Familial Support for Rare Genetic Conditions 1 activity
- Providing patient and family support and educationHosts virtual support and mentoring group meetings every other month for patients, families, and caregivers affected by APS Type 1, and organizes educational events such as HUDDLE meetings and discussions on NIH natural history studies and school resources for adrenal insufficiency.
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financials · form 990EZ · fy2025
revenue
Total revenue$126K
Contributions & grants$126K100%
Program service revenue$00%
Investment income$00%
Other revenue$25
expenses
Total expenses$113K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits$6K
Grants paid out$0
balance sheet
Total assets$373K
Cash—
Investments—
Liabilities—
Net assets$373K
6 years on record · 2020–2025 · YoY revenue -21.5%
leadership · form 990 part vii · fy2025
Who runs it
board members · 5
- David Seyfert — Board Member
- Gaby Talarico — Board Member
- Julia Richardson — Board Member
- Laura Rivard — Board Member
- Pushpa Rao — Board Member
relationships · 15
Who they work with
- Amy Coan Partner — Contact person for HUDDLE program inquiries
- GuideStar Network — Recognized as a GuideStar Gold certified nonprofit, indicating commitment to transparency.
- Massey College, University of Toronto Partner — Hosted the 2022 Inaugural Global Scientific Summit on APS Type 1.
- Medical Advisory Committee Coalition — Committee of medical experts advising the foundation on scientific and clinical matters related to APS Type 1.
- NIAID, NIH Partner — Hosts Dr. Michail S. Lionakis, Chief of the Fungal Pathogenesis Section, who conducts IRB-approved clinical research on APS Type-1/APECED in collaboration with the Foundation.
- NORD Partner — Collaborates with NORD to award research grants for APS Type 1.
- National Institutes of Health Partner — Collaborates on discussions regarding the NIH natural history study.
- National Institutes of Health Partner — Collaborates with the NIH on research and hosted the first participant in the Natural History Study at NIH.
- Raregivers™ Partner — Collaborates to support the rare disease community through shared resources and advocacy.
- Raregivers™ Partner — Collaborates with Raregivers™ to support individuals and families impacted by rare diseases through connection, education, and emotional support.
- Rockefeller University Partner — Employer of Dr. Dana Orange, who serves as principal investigator of the APS Type 1 web-based registry supported by the Foundation.
- UCSF Diabetes Center Partner — Hosts Dr. Mark Anderson, a professor and physician scientist involved in APS1 research supported by the Foundation.
- University of California, Los Angeles Partner — Hosts Dr. Maureen A. Su, a professor whose research on APS Type 1 is supported by the Foundation.
- University of Texas Health Sciences Center in San Antonio Partner — Site of fellowship training for Dr. Richard J. Auchus and potentially involved in endocrinology research relevant to the Foundation’s mission.
- Wired Impact Partner — Designed the nonprofit's website
strategies · 3
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.
- Community-Empowered Research Advancementmethodology: community-empowermentBy uniting and empowering a global community, the organization improves health outcomes for individuals with APS Type 1, because collective engagement drives awareness, education, and research momentum that accelerates progress toward better care.
- Patient-Clinician-Researcher Collaboration Modelmethodology: patient-clinician-research collaborationBy connecting patients, families, and clinician-scientists and funding research, the foundation accelerates progress toward better care and a cure, because cross-sector collaboration aligns lived experience with scientific rigor to prioritize impactful research.
- Real-World Data Acceleration via Patient-Reported Registrymethodology: patient-reported registryBy collecting real-world data through a patient-reported web-based registry, the foundation accelerates research, because centralized, lived-experience data lowers barriers to study recruitment and enhances clinical insight into APS Type 1.