named programs · 1 · from sources
What they call their work
Scleroderma Research Publications
Curates and supports the publication of peer-reviewed research on scleroderma, including systemic sclerosis pathophysiology, treatment strategies, and patient outcomes, authored by its medical leadership team
activities · 5 groups
What they do
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Autoimmune Disease Research Funding 2 activities
- Conducting and advancing scleroderma and Degos disease researchConducts and supports laboratory and clinical research on scleroderma and Degos disease, including development of treatment protocols, diagnostic tools, and publication of findings in scientific forums. Research efforts have contributed to extended remission in some patients and include studies on 3D splinting, systemic pharmacotherapy, gastrointestinal management, heart involvement, and clinical trials for pulmonary vascular disease and self-management programs.
- Funding scleroderma researchProvides financial support for research on scleroderma, including laboratory and clinical studies aimed at improving understanding and treatment of the disease.
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Rare Genetic Disease Research and Advocacy 2 activities
- Providing educational resources and awareness for Degos diseaseOffers informational resources and shares patient stories about Degos disease to raise awareness, support earlier diagnosis, and promote resilience among affected individuals.
- Training and supporting patient educatorsTrains and empowers scleroderma and rare disease patients to serve as educators, increasing awareness and supporting interprofessional learning through storytelling and direct engagement with healthcare trainees.
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Kidney Disease Education and Advocacy 1 activity
- Distributing scleroderma renal crisis prevention cardsProduces and distributes a pocket-sized renal crisis prevention card that patients can carry and present during emergencies, which includes space for personal and medical contact information to support rapid, appropriate care.
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Patient and Researcher Conferences 1 activity
- Interprofessional education programs for healthcare professionals and studentsHosts annual interprofessional education (IPE) forums and events for graduate-level health sciences students and professionals to improve timely and effective care for scleroderma and rare diseases. These programs have educated over 1,000 emerging healthcare providers over 10 years and have expanded from in-person events in Albany, NY to nationwide virtual participation via Zoom.
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Disease-Specific Clinical & Patient Education 1 activity
- Producing scleroderma awareness podcast and newslettersProduces a podcast, “Mogil’s Mobcast: A Scleroderma Chat Podcast,” featuring global guests, and issues a quarterly email newsletter to share experiences, raise awareness, and keep stakeholders informed about living with scleroderma.
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financials · form 990 · fy2024
revenue
Total revenue$53K
Contributions & grants$53K100%
Program service revenue$00%
Investment income$00%
Other revenue$0
expenses
Total expenses$80K
Program expenses92%
Admin / overhead0%
Fundraising8%
Salaries & benefits$0
Grants paid out$0
Largest expense lineOther
balance sheet
Total assets$127K
Cash$127K
Investments$0
Liabilities$0
Net assets$127K
Liquid reserves19.1 mo
4 years on record · 2020–2024 · YoY revenue -69.0%
relationships · 50
Who they work with
- Albany College of Pharmacy and Health Sciences Partner — Academic partner hosting the IPE forum, as indicated by logo presence and event location.
- Albany College of Pharmacy and Health Sciences Partner — Collaborates on rare disease research and education
- Albany Medical College Partner — Collaborates on rare disease research and physician training
- American Society of Hand Therapists Partner — Collaborated to deliver scleroderma-focused education at ASHT's 2020 annual meeting.
- Boston University School of Medicine Partner — Collaborates on pioneering research and specialized education for rare diseases
- Clemson University Partner — Collaborates on interdisciplinary research and education for rare diseases
- Cornell University Partner — Collaborates on integrating biology, health sciences, and research for rare diseases
- Degos Disease Foundation Partner — Collaborates on patient education and support for rare diseases
- Degos Disease Foundation Partner — Featured as an organization providing information about Degos disease, an ultra-rare disease similar to scleroderma.
- Degos Disease Foundation Partner — Integrated into the Steffens Scleroderma Foundation to jointly advance research and education on Degos disease and scleroderma.
- Degos Disease Foundation Partner — Operates under and as a vital part of the Steffens Scleroderma Foundation; receives funding and shared infrastructure.
- Degos Disease Foundation Partner — Referenced as a related organization with shared educational video resources.
- EUropean Scleroderma Trials And Research group (EUSTAR) Partner — Featured as an organization advancing scleroderma research through global clinical collaboration.
- European Medicines Agency Government — References EMA definition of rare diseases in Europe
- European Scleroderma Trials and Research (EUSTAR) Partner — Collaborated on research evaluating heart involvement and chronic heart failure in systemic sclerosis.
- Friends of World Scleroderma Foundation Partner — Featured as an organization supporting and promoting the global efforts of the World Scleroderma Foundation.
- Helen Polenz Funder — Provided a generous gift that made the foundation possible in memory of Ann Steffens.
- Interprofessional Education Collaborative (IPEC) Partner — Collaborates on interprofessional education initiatives for health professions
- Johns Hopkins Scleroderma Center Partner — Featured as a scleroderma-specific resource providing expert care and advancing research.
- MedlinePlus Government — Featured as a source of reliable health information from the National Library of Medicine.
- National Institute of Arthritis and Musculoskeletal and Skin Diseases Government — Featured as an organization advancing research on arthritis, musculoskeletal, and skin diseases.
- National Institutes of Health Network — References NIH Office of Rare Diseases as a source for rare disease prevalence data
- National Institutes of Health (NIH) Government — Featured as an organization conducting research and supporting health advancements worldwide.
- National Institutes of Health (NIH) Partner — Collaborates on groundbreaking research and funding initiatives for rare diseases
- National Organization for Rare Disorders Network — References NORD as a source for rare disease prevalence data
- National Organization for Rare Disorders Partner — Featured as an organization providing support, education, and resources for patients with rare disorders including scleroderma.
- National Organization for Rare Disorders (Degos Disease page) Partner — Featured as a source of support, education, and resources for Degos disease.
- Nazareth University Partner — Collaborates on training social workers for rare disease support
- OMERACT Outcome Measures in Rheumatology Partner — Featured as an organization improving outcomes by advancing clinical research in autoimmune and musculoskeletal diseases.
- Orphanet Partner — Featured as an organization providing rare disease information and resources for patients and professionals.
+ 20 more
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.
- Collaborative Research and Education Networkmethodology: collaborative_research_networkBy uniting researchers, clinicians, patients, and institutions in a shared network, the organization accelerates rare disease research and education, because collective expertise and patient engagement reduce diagnostic delays and improve care quality.
- Cross-Disease Research Leveragemethodology: cross-disease-researchBy studying shared vascular mechanisms across scleroderma, Degos disease, dermatomyositis, and lupus, the organization generates transferable insights, because rare disease research can unlock broader understanding of autoimmune and vascular pathologies.
- Early Diagnosis Through Awareness and Empowermentmethodology: early-diagnosis-through-awarenessBy increasing awareness of systemic disease in patients with skin symptoms and equipping patients with emergency tools, the organization reduces time to diagnosis and improves emergency response, because empowered patients and informed providers enable earlier, life-saving interventions.
- Interprofessional Education with Patient Engagementmethodology: interprofessional_educationBy integrating interprofessional education with patient-centered teaching, the organization improves diagnosis and care coordination, because involving patients as educators fosters cross-disciplinary awareness and clinical responsiveness to rare disease presentations.
- Research-Driven Discovery for Rare Diseasesmethodology: research-driven approachBy funding and conducting targeted medical research, the organization advances understanding and treatment of scleroderma and related rare diseases, leveraging insights to generate broader medical knowledge applicable across autoimmune and vascular conditions.