Alstrom Syndrome International
- Company typePrivate
- Founded1998
- HeadquartersBurleson, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
Alstrom Syndrome International firmographics
Firmographics- Name
- Alstrom Syndrome International
- Legal name
- Alstrom Syndrome International
- Website
- https://alstrom.org
- Company type
- Private
- Founded year
- 1998
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Ownership category
- akta.pro rank
Alstrom Syndrome International industry classification
Industry- Product category
- Rare Disease Patient Advocacy
- NAICS
- Voluntary Health Organizations (813212)
- SIC
- Services-Misc Health & Allied Services, Nec (8090)
- akta.pro primary industry
- Rare Disease & Special Needs Support Organizations (BPAGACAM)
Keywords
Where Alstrom Syndrome International is headquartered
LocationHeadquarters
- HQ city
- Burleson
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
Alstrom Syndrome International business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Others
Revenue model
- Donations and Fundraising: The organization raises funds through annual fund drives, with a stated $1 Million Total Fundraising Goal. Monthly donors contribute to ongoing operations.
- Grants and Philanthropy: ASI secures funding through grants and philanthropy, including support from organizations like CZI (Chan Zuckerberg Initiative), Genetic Alliance, and NORD.
- Merchandise Store: The organization operates a merchandise store through esixsportswear.com to generate additional revenue supporting the mission.
Go-to-market motion2 records
Distribution channels5 records
Marketing channels6 records
Alstrom Syndrome International product offering
Product offeringCore offering
Alstrom Syndrome International is a 501(c)(3) nonprofit that supports individuals and families affected by Alström Syndrome, an ultra-rare genetic disorder, through education, research coordination, advocacy, and resource provision. The organization represents patients in 47 countries and operates the world's largest Alström Syndrome clinical database to advance scientific understanding of the condition. Its offerings are primarily funded through donations, grants, and merchandise sales.
Product overview
Alstrom Syndrome International operates as a nonprofit patient advocacy organization rather than a traditional product company. Its core offerings consist of the world's largest Alstrom Syndrome clinical database, a patient registry, the ASI Biobank and Natural History Study, a comprehensive Family Handbook, and biennial family conferences & scientific symposiums. These services work together to provide support, information, and coordination worldwide to families and professionals affected by Alstrom Syndrome, while advancing scientific research toward a cure.
Differentiator
Problem solved
Functional benefit
Products and services
- Awareness Merchandise
- Alström Syndrome Clinical Database Access
- Research Grants Program
Companies that use Alstrom Syndrome International
Customer profileNamed customers3 records
Segments3 records
Ideal customer profiles2 records
Alstrom Syndrome International technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Alstrom Syndrome International partnerships and signals
Strategic signalPartnerships
Seven partnerships are on record, tiered core and minor.
- Chan Zuckerberg Initiative (CZI)coreCZI logo is displayed on the ASI partners page, indicating partnership support for the organization's mission to accelerate research and support families affected by Alstrom Syndrome.
- Genetic AlliancecoreGenetic Alliance logo is shown on the ASI partners page, representing collaboration with this leading organization in genetic disease advocacy and research.
- National Organization for Rare Disorders (NORD)coreNORD logo is displayed on the ASI partners page, indicating membership and collaboration with the leading rare disease organization in the United States.
- EurodiscoreEurodis logo is shown on the ASI partners page, representing collaboration with the European rare disease organization.
- Sheraton Downtown Fort Worth HotelminorOfficial host hotel sponsor for the 11th ASI Family Conference & Scientific Symposium in Fort Worth, TX (May 2026). Hotel booking deadline is April 29, 2026.
- Chelsea Ann PhotographyminorOfficial photographer for the 11th ASI Family Conference & Scientific Symposium, capturing photos from Saturday and Sunday night events.
- Global Genes FoundationcoreASI is a member of the Global Advocacy Alliance, a coalition of rare disease advocacy organizations.
Scale indicators5 records
Recent moves5 records
Expansion highlights5 records
Alstrom Syndrome International competitors and assessment
Company assessmentDirect peers
- Global Genes: Global Genes is a rare disease advocacy nonprofit and convener of the Global Advocacy Alliance, of which ASI is a member. It is highly comparable in mission (advocacy, education, community-building for rare disease patients) and model, and is an explicit strategic peer through shared membership.
- Genetic Alliance: Genetic Alliance is a US-based nonprofit focused on genetic disease advocacy, research, and patient support infrastructure. Listed as an ASI partner, it shares the genetic-disease-advocacy core focus and operates an overlapping research/community model, making it a very direct peer.
- Tuberous Sclerosis Alliance: The Tuberous Sclerosis Alliance is a disease-specific rare disease nonprofit that runs a clinical database/registry, conferences, and clinician-facing diagnostic and treatment resources across multiple organ systems. Its multi-system nature and advocacy-driven research funding model make it a strong direct peer to ASI.
- Friedreich's Ataxia Research Alliance (FARA): FARA is a rare genetic disease nonprofit that funds research, operates a patient registry and natural history study, hosts scientific symposia and family conferences, and partners with biotech and academic researchers. Its operating model maps closely onto ASI's research/registry/conference stack.
- Cure SMA (Spinal Muscular Atrophy): Cure SMA is a disease-specific rare disease nonprofit that funds research, runs patient registries, hosts family conferences and scientific symposia, and supported the development of approved SMA therapies. Its combination of research funding, registry, and family/community programming closely parallels ASI's model.
- Charcot-Marie-Tooth Association (CMTA): CMTA is a US rare genetic disease nonprofit that funds research, operates a patient registry, supports clinical care resources, and convenes families and researchers. Its genetic-disease focus and registry/research model are highly comparable to ASI's approach for Alstrom.
- Parent Project Muscular Dystrophy (PPMD): PPMD is a disease-specific rare disease nonprofit (Duchenne muscular dystrophy) that funds research, runs a registry/biobank, convenes families and clinicians, and advocates for patients globally. Its operating model is the closest analog to ASI among single-disease rare disease groups.
Broad incumbents
- National Organization for Rare Disorders (NORD): NORD is the leading US umbrella advocacy organization for all rare diseases, providing research grants, policy advocacy, and patient resources. ASI partners with NORD and operates a more disease-specific version of the same advocacy/support model, making NORD a direct functional peer in the rare-disease nonprofit space.
- Cystic Fibrosis Foundation: The Cystic Fibrosis Foundation is the benchmark disease-specific rare disease nonprofit, having built a patient registry, research funding engine, and care network that transformed CF therapeutics. While far larger, its structural model — registry, research funding, clinical care standards — directly mirrors ASI's approach for Alstrom.
Regional players
- EURORDIS – Rare Diseases Europe: EURORDIS is the European federation of rare disease patient organizations and a listed ASI partner. It mirrors ASI's patient-advocacy role at a continental scope, serving as the most directly comparable peer for ASI's European engagement.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat4 records
Key risks6 records
Key highlights7 records
Customer concentration
Alstrom Syndrome International social profiles
Digital presenceAlstrom Syndrome International compliance and trust
Trust signalCompliance1 record
Alstrom Syndrome International financial estimates
Financial estimateRevenue estimate
Valuation estimate
Alstrom Syndrome International leadership team
Management profileNumber of profiles
Profiles2 records
Alstrom Syndrome International funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Alstrom Syndrome International 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 Alstrom Syndrome International
What does Alstrom Syndrome International do?
Alstrom Syndrome International is a 501(c)(3) nonprofit that supports individuals and families affected by Alström Syndrome, an ultra-rare genetic disorder, through education, research coordination, advocacy, and resource provision. The organization represents patients in 47 countries and operates the world's largest Alström Syndrome clinical database to advance scientific understanding of the condition. Its offerings are primarily funded through donations, grants, and merchandise sales.
Is Alstrom Syndrome International a public or private company?
Alstrom Syndrome International is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Alstrom Syndrome International founded?
Alstrom Syndrome International was founded in 1998. It employs 1 to 10 people.
Where is Alstrom Syndrome International based?
Alstrom Syndrome International is headquartered in Burleson, United States, in the North America region.
How does Alstrom Syndrome International make money?
Three revenue lines are on record. Donations and Fundraising is the primary driver. The others are grants and Philanthropy and merchandise Store.
Who are Alstrom Syndrome International's main competitors?
Direct peers on record are Global Genes, Genetic Alliance, Tuberous Sclerosis Alliance, Friedreich's Ataxia Research Alliance (FARA), Cure SMA (Spinal Muscular Atrophy), Charcot-Marie-Tooth Association (CMTA) and Parent Project Muscular Dystrophy (PPMD). Broad incumbents are National Organization for Rare Disorders (NORD) and Cystic Fibrosis Foundation. EURORDIS – Rare Diseases Europe is listed as a regional player.
Does Alstrom Syndrome International have an API?
No public API is recorded for Alstrom Syndrome International.
What industry is Alstrom Syndrome International in?
Alstrom Syndrome International's product category is Rare Disease Patient Advocacy. Its primary akta.pro industry code is BPAGACAM, Rare Disease & Special Needs Support Organizations. Its NAICS code is 813212 and its SIC code is 8090.