The Amyloidosis Foundation
- Company typePrivate
- Founded2003
- HeadquartersClarkston, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
What The Amyloidosis Foundation does
The Amyloidosis Foundation is a 501(c)(3) non-profit organization (EIN 20-0291856) founded in 2003 and headquartered at 7151 N. Main St., Ste. 2, Clarkston, Michigan. The Foundation's mission is to provide education, patient support, advocacy, and research funding for systemic amyloidosis, a rare group of diseases characterized by abnormal amyloid protein deposition. It serves three primary segments: diagnosed amyloidosis patients (across AL, AA, hereditary, and wild-type subtypes), their caregivers and families, and the healthcare professionals who treat them.
The Foundation's core product is the amyloidosis.org website, which functions as a comprehensive information hub for all amyloidosis types and hosts a portfolio of supporting programs: expert-led webinars (e.g., City of Hope's Dr. Tibor Kovacsovics on autologous stem cell transplantation), a patient-stories library, a video library ('The Amyloidosis Channel' distributed via VJHemonc), a recurring newsletter (e.g., 2026 Spring Newsletter), an awareness-merchandise shop, an annual virtual Run-Walk-Roll-Bike fundraising event ('Run for Your Life'), and a Treatment Center Resources directory. It also operates a Research Grant Program funding scientific studies at major U.S. institutions including Boston University, Tufts, Brigham and Women's Hospital, Mayo Clinic, Columbia University, and Johns Hopkins.
The Foundation operates as a charitable organization: all educational content and patient services are provided free of charge, with revenue generated through donations, grants, merchandise sales, and event-based fundraising rather than product pricing. Pricing is not publicly disclosed. The Foundation has no commercial go-to-market motion and distributes its services directly to patients, families, and clinicians through its website, email, and virtual events. Headcount is reported at 1-10 employees, consistent with a small, mission-driven non-profit.
The Amyloidosis Foundation firmographics
Firmographics- Name
- The Amyloidosis Foundation
- Legal name
- Amyloidosis Foundation
- Website
- https://amyloidosis.org
- Company type
- Private
- Founded year
- 2003
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Ownership category
- akta.pro rank
The Amyloidosis Foundation industry classification
Industry- Product category
- Rare Disease Patient Advocacy
- NAICS
- Voluntary Health Organizations (813212)
- SIC
- Services-Social Services (8300)
- akta.pro primary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
- akta.pro secondary industry
- Health & Medical Research Grantmaking Foundations (BPAGAKAL)
Keywords
Where The Amyloidosis Foundation is headquartered
LocationHeadquarters
- HQ city
- Clarkston
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
The Amyloidosis Foundation business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Others
Distribution channels1 record
Marketing channels6 records
The Amyloidosis Foundation product offering
Product offeringCore offering
The Amyloidosis Foundation is a 501(c)(3) nonprofit that provides free education, patient support resources, and research grants focused on systemic amyloidosis. It operates a central information hub (amyloidosis.org) covering all amyloidosis types (AL, AA, hereditary, wild-type), funds scientific research through grant programs, hosts expert-led webinars, publishes patient stories, and runs awareness and fundraising events such as the annual 'Run for Your Life' virtual Run-Walk-Roll-Bike.
Product overview
The Amyloidosis Foundation operates primarily as an informational and advocacy nonprofit rather than a technology product company. Its core offering is the comprehensive amyloidosis.org website, which serves as a central hub for patient education across multiple amyloidosis types (AL, AA, Hereditary, Wild-type, Other). Supporting modules include educational webinars featuring medical experts, a patient stories platform, research grants program funding scientific studies, an online shop selling awareness merchandise, annual virtual fundraising events, newsletters, a video library, and treatment center resources. These components work together to fulfill the Foundation's mission of education, advocacy, patient support, and research funding for amyloidosis.
Differentiator
Problem solved
Functional benefit
Products and services
- Research Grants Program
Companies that use The Amyloidosis Foundation
Customer profileSegments3 records
Ideal customer profiles3 records
The Amyloidosis Foundation technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
The Amyloidosis Foundation partnerships and signals
Strategic signalPartnerships
Four partnerships are on record, tiered core and minor.
- City of Hope Cancer CentercoreCity of Hope Cancer Center physicians (Dr. Tibor Kovacsovics, Dr. Faizi Jamal) serve as speakers for Amyloidosis Foundation educational webinars on topics including cardiac amyloidosis diagnosis and stem cell transplantation for AL amyloidosis.
- VJHemonc (The Amyloidosis Channel)minorThe Amyloidosis Channel, hosted on VJHemonc.com, provides expert-led video content on amyloidosis topics including diagnosis and treatment.
- Attralus, Inc.minorAttralus Therapeutics press releases about FDA orphan drug designation for zamubafusp alfa (AT-02) for AL amyloidosis are shared through the foundation's news section to inform patients about treatment developments.
- Various Research InstitutionscoreFoundation funds research grants at institutions including Boston University Medical Center, Tufts Medical Center, Brigham and Women's Hospital, Mayo Clinic, Columbia University, Johns Hopkins University, and others through its Amyloidosis Foundation Research Grant program.
Scale indicators1 record
Recent moves6 records
Expansion highlights4 records
The Amyloidosis Foundation competitors and assessment
Company assessmentBroad incumbents
- Leukemia & Lymphoma Society: A major hematologic cancer-focused non-profit that funds research and provides patient support. Highly relevant given AL amyloidosis is treated by hematologists and overlaps clinically with blood cancers, with comparable research grant programs and patient education infrastructure.
- National Organization for Rare Disorders (NORD): The umbrella advocacy organization for rare diseases in the US, representing over 300 disease-specific patient organizations. Comparable as a fellow rare disease advocacy and grantmaking entity, though operating at a broader categorical level rather than for a single disease.
- Muscular Dystrophy Association: A larger, established disease-focused non-profit funding neuromuscular disease research and patient services. Comparable in mission structure (research grants, patient support, advocacy) but operates at significantly larger scale across multiple disease categories.
Direct peers
- ALS Association: A major disease-specific health non-profit that funds ALS research, provides patient services, and drives awareness for a rare neurodegenerative disease. Highly comparable structure: research grants, patient education, advocacy, fundraising events, and multi-channel engagement targeting patients and caregivers of a rare condition.
- Scleroderma Foundation: A disease-specific health non-profit supporting patients with scleroderma (systemic sclerosis), another rare autoimmune condition. Comparable peer support, patient education, research funding, and chapter-based community engagement model.
- Multiple Myeloma Research Foundation: A disease-specific non-profit funding research and providing patient support for multiple myeloma, a related hematologic condition that often overlaps clinically with AL amyloidosis. Comparable patient education, research grant programs, and partnership models with cancer centers.
- Pulmonary Fibrosis Foundation: A non-profit focused on a rare respiratory disease (pulmonary fibrosis), which frequently co-occurs with amyloidosis in patients. Similar structure: research grants, patient education, support resources, awareness events, and partnerships with academic medical centers.
- Amyloidosis Research Consortium: A non-profit organization specifically focused on accelerating amyloidosis research and improving patient outcomes. Directly comparable to the Amyloidosis Foundation as both serve the same rare disease community with overlapping missions of research funding and patient support.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat3 records
Key risks6 records
Key highlights6 records
Customer concentration
The Amyloidosis Foundation social profiles
Digital presenceThe Amyloidosis Foundation financial estimates
Financial estimateRevenue estimate
Valuation estimate
The Amyloidosis Foundation leadership team
Management profileNumber of profiles
The Amyloidosis Foundation funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
The Amyloidosis Foundation M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about The Amyloidosis Foundation
What does The Amyloidosis Foundation do?
The Amyloidosis Foundation is a 501(c)(3) nonprofit that provides free education, patient support resources, and research grants focused on systemic amyloidosis. It operates a central information hub (amyloidosis.org) covering all amyloidosis types (AL, AA, hereditary, wild-type), funds scientific research through grant programs, hosts expert-led webinars, publishes patient stories, and runs awareness and fundraising events such as the annual 'Run for Your Life' virtual Run-Walk-Roll-Bike.
Is The Amyloidosis Foundation a public or private company?
The Amyloidosis Foundation is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was The Amyloidosis Foundation founded?
The Amyloidosis Foundation was founded in 2003. It employs 1 to 10 people.
Where is The Amyloidosis Foundation based?
The Amyloidosis Foundation is headquartered in Clarkston, United States, in the North America region.
Who are The Amyloidosis Foundation's main competitors?
Broad incumbents on record are Leukemia & Lymphoma Society, National Organization for Rare Disorders (NORD) and Muscular Dystrophy Association. Direct peers are ALS Association, Scleroderma Foundation, Multiple Myeloma Research Foundation, Pulmonary Fibrosis Foundation and Amyloidosis Research Consortium.
Does The Amyloidosis Foundation have an API?
No public API is recorded for The Amyloidosis Foundation.
What industry is The Amyloidosis Foundation in?
The Amyloidosis Foundation's product category is Rare Disease Patient Advocacy. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS), with a secondary code of BPAGAKAL, Health & Medical Research Grantmaking Foundations. Its NAICS code is 813212 and its SIC code is 8300.