Alström Syndrome International

What Alström Syndrome International does

Alström Syndrome International (ASI) is a 501(c)(3) nonprofit organization founded in 1995 and headquartered in Burleson, Texas, that supports individuals affected by Alström Syndrome — an ultra-rare genetic condition (prevalence approximately 1 in 514,000) caused by mutations in the ALMS1 gene affecting vision, hearing, cardiac function, metabolism, and other systems. The organization serves a global community across 47 countries representing every ethnicity, anchored by a six-person staff led by Executive Director Rocky Tucker and Science Director Chase A. Palmer, supported by a board of directors, Family Support Coordinators, and a network of 11 affiliated regional partner organizations spanning North America, South America, Europe, Asia, and Africa.

ASI's core service portfolio includes the Alström Syndrome Patient Registry, the ASI Handbook, evidence-based clinical monitoring guidelines, specialized pediatric and adult clinics held at partner hospitals (Golisano Children's Hospital and Riley Children's Health), biennial international Family Conferences & Scientific Symposia, Family Support Services, a Sibling Circle Program, and the world's largest Alström clinical database containing data from more than 900 individuals. In December 2025, ASI formalized two strategically significant partnerships: a data collection initiative with RARE-X (Global Genes) enabling patient-owned structured research data, and a research collaboration with Alstara, a biotech focused on Alström treatment development. Research collaborations also extend to The Jackson Laboratory (Naggart Lab) and international medical centers in Italy, Canada, the UK, and Sweden.

The organization operates as a community-led nonprofit with no commercial products or services sold. Revenue is generated entirely through individual donations, annual fundraising campaigns (including a current $1 Million Total Fundraising Goal for the Annual Fund Drive), and grants and philanthropy from foundations and partner organizations including the Chan Zuckerberg Initiative, NORD, EURORDIS, and Genetic Alliance. ASI's go-to-market is direct engagement rather than traditional sales channels, reaching families and professionals through its website, social media, newsletters, conferences, and curated peer-support networks including a private Facebook group.

Name

Alström Syndrome International

Legal name

Alström Syndrome International

Website

https://alstrom.org

Company type

Private

Founded year

1995

Operating status

Operating

Short description

Alström Syndrome International is a 501(c)(3) nonprofit that supports families and advances research for the ultra-rare Alström Syndrome across 47 countries, managing the world's largest clinical database of 900+ patients and coordinating clinical guidelines, conferences, and global regional partner organizations.

Ownership category

akta.pro rank

Headquarters

HQ city

Mount Desert

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Individual Donations: Individual donors contribute tax-deductible donations to support ASI's mission of providing support, information, and coordination worldwide to families and professionals treating Alström Syndrome while working toward a cure.
2. Fundraising Campaigns: Annual Fund Drive campaigns and special fundraising events like Boots & BBQ For a Cure generate revenue. Current campaign aims for $1 Million total fundraising goal.
3. Grants and Philanthropy: Secures funding through grants, corporate partnerships, and annual giving programs from foundations and organizations supporting rare disease research.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels7 records

Core offering

Alström Syndrome International (ASI) is a 501(c)(3) nonprofit organization that supports individuals and families affected by Alström Syndrome and advances clinical and translational research toward a cure. Its core offerings comprise family support services, educational resources (ASI Handbook, Monitoring Guidelines), the world's largest Alström Clinical Database, the Patient Registry and RARE-X Data Collection Program, specialized pediatric and adult Clinical Clinics, and biennial Family Conference & Scientific Symposiums. ASI operates across 47 countries and has no commercial products; all services are delivered free of charge to families and clinicians.

Product overview

Alström Syndrome International (ASI) operates as a nonprofit patient advocacy and research coordination organization rather than a commercial software product company. Its offerings comprise a suite of service programs: the Alström Syndrome Patient Registry enabling data contribution for research; the ASI Handbook providing comprehensive disease management guidance; the RARE-X Data Collection Program powering patient-owned research data collection; biennial Family Conference & Scientific Symposium events; specialized Clinical Clinics at partner hospitals; Family Support Services coordinated by support coordinators; the world's largest Alström Syndrome Clinical Database with data from over 900 individuals; Sibling Circle support for siblings; Visually Impaired Resources; and Monitoring Guidelines for clinicians. These services work together to support families, advance research, and accelerate progress toward treatments and a cure.

Differentiator

Problem solved

Functional benefit

Products and services

• Alström Syndrome Patient Registry A patient registry program allowing individuals with Alström Syndrome to contribute their health data to accelerate research and drug development, enabling participation in clinical trials and supporting the global research community.
• RARE-X Data Collection Program A patient-owned data collection initiative powered by the RARE-X technology platform that enables Alström families to contribute research-ready data in a phased approach, accelerating research and clinical trial development while preserving family governance, consent, and data security.
• ASI Family Conference & Scientific Symposium A biennial international event bringing together families, researchers, clinicians, and advocates for connection, education, and research advancement, including scientific presentations, family activities, and stakeholder meetings.
• Alström Syndrome Clinical Clinics Specialized pediatric and adult clinics held at partner hospitals that bring together medical professionals experienced with Alström Syndrome, offering personalized care, stakeholder meetings, and family networking opportunities.
• Family Support Services A coordinated network of Family Support Coordinators providing guidance, connecting families with medical specialists, facilitating access to the private Facebook group, and keeping families informed about research advances and upcoming events.
• Alström Syndrome Clinical Database The world's largest Alström clinical database containing information from more than 900 individuals worldwide, supporting research collaborations and providing essential data for understanding the disease.
• ASI Handbook A comprehensive handbook providing expert information, guidance, and tools for navigating life with Alström Syndrome, covering diagnosis, management, and treatment of the condition.
• Monitoring Guidelines Evidence-based clinical management guidelines for monitoring and treating Alström Syndrome, including recommended tests and examinations across multiple organ systems (vision, hearing, cardiac, hepatic, endocrine, renal, and others).
• Sibling Circle Program A support program specifically designed for siblings of individuals with Alström Syndrome, providing resources, community connections, and support coordination to help siblings navigate the challenges of having a sibling with a rare disease.

Quantifiable outcome

• Patient database covering 900+ individuals worldwide
• +2 more outcomes

Named customers2 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature2 records

Partnerships

24 partnerships are on record, tiered core and supporting.

• RARE-X (Global Genes)coreStrategic or Co-development Partner · 1 December 2025The Alström Syndrome community is partnering with RARE-X, a program of Global Genes, to build a Data Collection Program. This patient-owned data initiative will help accelerate research and the development of new drugs, devices, and therapies. The RARE-X technology platform enables structured data collection while families maintain governance, consent, and data security.
• AlstaracoreStrategic or Co-development Partner · 1 December 2025New partnership announced in December 2025 Research & Science Update. Alstara is a research partner contributing to ASI's powerful roadmap for research efforts over the next several years.
• Sheraton Downtown Fort Worth HotelsupportingGTM or Marketing PartnerHost hotel and sponsor for the 11th ASI Family Conference & Scientific Symposium. Located at 1701 Commerce Street, Fort Worth, TX 76102. Provides conference venue and accommodation for attendees.
• Genetic AlliancesupportingStrategic or Co-development PartnerPartner organization strengthening research and advocacy for rare disease community
• National Organization for Rare Disorders (NORD)supportingStrategic or Co-development PartnerPartner organization supporting rare disease advocacy and patient interests
• EURORDISsupportingStrategic or Co-development PartnerEuropean rare disease organization partner for international advocacy collaboration
• The Jackson LaboratorycoreStrategic or Co-development PartnerResearch partner providing Fat Aussie mouse models used in Alström research. Located in Bar Harbor, ME. The Naggert Lab at JAX conducts Alström-related research.
• Riley Children's Health at IU HealthcoreStrategic or Co-development PartnerMedical center partner hosting Adult Clinic and Stakeholder Meeting in Indianapolis, Indiana
• Golisano Children's HospitalcoreStrategic or Co-development PartnerMedical center partner hosting Pediatric Clinic and Stakeholder Meeting in Rochester, NY
• University School of Medicine, Padua, ItalysupportingStrategic or Co-development PartnerInternational research and medical center collaborating on Alström Syndrome research efforts
• The Hospital for Sick Children, Toronto, CanadasupportingStrategic or Co-development PartnerInternational pediatric research center partner for Alström research collaboration
• Birmingham Children's Hospital, UKsupportingStrategic or Co-development PartnerUK-based pediatric hospital partner for international research efforts
• Swedish Institute for Disability Research, Örebro University HospitalsupportingStrategic or Co-development PartnerScandinavian research partner contributing to Alström Syndrome research and clinical understanding
• Alström Syndrome UKsupportingChannel Partner/ Reseller/ DistributorRegional partner organization based at 31 Shearwater Drive, Torquay, Devon TQ2 7TL. Led by CEO Ann Chivers. Serves Alström families in the United Kingdom.
• Alström Syndrome AustraliasupportingChannel Partner/ Reseller/ DistributorRegional partner organization serving Alström families in Australia through Facebook community
• ASI BrazilsupportingChannel Partner/ Reseller/ DistributorRegional partner serving Brazilian families at SMPW quadra 17 conjunto 7 Lote 1 casa G, Park Way, Brasilia-DF, CEP: 71741-707, Brasil
• Alström Syndrome CanadasupportingChannel Partner/ Reseller/ DistributorRegional partner serving Canadian families. Contact: Linda Holland and Palmer Douglas
• ASI Deutschland (Germany)supportingChannel Partner/ Reseller/ DistributorRegional partner in Germany. Contact: Dr. med. Sebastian Beck, Kinderarztpraxis im Blauen Haus, Hauptstr. 138, CH-8280 Kreuzlingen
• France AlströmsupportingChannel Partner/ Reseller/ DistributorRegional partner in France at 70 bis rue du Général de Gaulle 95, 370 Montigny Les Cormeilles
• ASSAI - Associazione Sindrome di Alström ItaliasupportingChannel Partner/ Reseller/ DistributorItalian national association serving Alström families in Italy
• Alström Syndrome JapansupportingChannel Partner/ Reseller/ DistributorRegional partner in Japan at 5-23 Karasubashichou Fushimiku Daigo Kyoto, Japan 601-1315
• Stichting Alström Syndroom (Netherlands)supportingChannel Partner/ Reseller/ DistributorDutch foundation serving Alström families in the Netherlands
• Alström SpainsupportingChannel Partner/ Reseller/ DistributorRegional partner in Spain serving Spanish-speaking Alström families
• Alström Sendromu Dernegi (Turkey)supportingChannel Partner/ Reseller/ DistributorTurkish national association at Abant Izzet Baysal Üniversitesi Dekanlik Binasi 2.kat Gölköy Bolu, Turkey

Scale indicators4 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella advocacy organization representing hundreds of rare disease patient groups including ASI; provides shared advocacy, policy, and research infrastructure for the broader community.
• Global Genes: Allied rare disease advocacy organization that operates the RARE-X data platform used by ASI; comparable mission at a broader cross-disease level.
• EURORDIS - Rare Diseases Europe: European umbrella for rare disease patient organizations; ASI's listed international partner that coordinates cross-border advocacy and rare disease policy in Europe.

Direct peers

• Cystinosis Research Foundation: Ultra-rare disease-specific nonprofit that funds research, supports affected families, and convenes researchers/clinicians globally — same structural model as ASI, applied to cystinosis.
• Cystic Fibrosis Foundation: Patient-founded nonprofit that supports families affected by a single rare genetic disease, funds a global research/clinical trials network, and operates a patient registry — directly analogous to ASI's model for Alström Syndrome.
• Foundation for Prader-Willi Research: Single-disease rare disease nonprofit funding research, running patient registries, and hosting scientific/family conferences — directly mirrors ASI's three-pillar model (family support, education, research).
• The Marfan Foundation: Rare genetic disease nonprofit providing family support, clinical management guidelines, and a patient registry — similar mission, similar GTM (community-led, multi-channel engagement).

Regional players

• Alström Syndrome Canada: Canadian regional counterpart serving Alström families locally; operates under ASI's regional partner network with comparable mission but narrower geographic scope.
• Alström Syndrome UK: Sister organization supporting Alström families in the United Kingdom; serves the same patient population as ASI but in a different geography, listed as ASI's regional channel partner.

Others

• RARE-X: Federated patient-owned data collection platform (a program of Global Genes) that ASI uses to power its data collection program; an ecosystem enabler rather than a peer advocacy organization.

Market position

Strengths4 records

Weaknesses5 records

Competitive moat5 records

Key risks4 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/alstromsyndromeinternational
• Instagraminstagram.com/alstromsyndromeinternational

Revenue estimate

Valuation estimate

Number of profiles

Profiles21 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Alström Syndrome International