Angelman Syndrome Foundation

What Angelman Syndrome Foundation does

The Angelman Syndrome Foundation (ASF) is a U.S. nonprofit organization founded on January 6, 1992, and headquartered in Aurora, Illinois, dedicated exclusively to Angelman syndrome, a rare neurogenetic disorder affecting approximately 1 in 15,000 live births. The foundation serves four interlocking stakeholder groups: families of individuals with Angelman syndrome (the primary community), academic and clinical researchers, pharmaceutical and biotech companies developing therapeutics, and clinicians in its global network of ASF Clinics spanning North America, Europe, South America, and the Middle East. ASF's core offerings include the Contact Registry for family enrollment, the annual Family Conference, the ASF Family Fund financial-assistance program, Angelman Strong walks held at nearly 50 locations, Chicago Marathon and runDisney fundraising teams, the ASF Cure Club monthly giving program, and the Send Sunshine initiative.

The foundation's primary technology and research infrastructure is the LADDER (Linking Angelman and Dup15q Data for Expanded Research) platform, a collaborative database built jointly with the Dup15q Alliance and hosted by RTI International. LADDER aggregates data from the Angelman Natural History Study, ASF Clinics, the Global Angelman Syndrome Registry, and partner research studies, and is accessible to physicians, researchers, and pharmaceutical partners for treatment development and clinical trial design. ASF complements LADDER with the ABOM (Angelman Syndrome Biomarkers and Outcome Measures) consortium and a Clinical Trials Committee that supports standardized outcome measures and trial readiness, including the recently released Clinical Trial Excellence Resource. The foundation awards research grants up to $100,000 per investigator annually and operates a 10% indirect-cost policy.

ASF's revenue model is donation-driven and diversified across individual giving (one-time and ASF Cure Club monthly), text-to-give (SMS to 44321), Send Sunshine contributions, shop-and-support merchandise, event-based fundraising (Angelman Strong walks, marathon and runDisney participation, Family Conference), and out-of-bound research grant disbursements. Services to families are provided at no cost, and the organization is governed by a 19-member Board of Directors and led by CEO Amanda Moore with a staff of approximately 26. Strategic priorities include expanding the international clinic network, formalizing patient advocacy through its Global Community Advisory Board and Congressional Advocacy Day, and continuing to drive therapeutic development evidenced by the first ASO Phase 1 trial in 2020, the FDA Breakthrough Therapy Designation for Ionis's ION582, and Phase 3 enrollment completion by Ultragenyx for GTX-102.

Name

Angelman Syndrome Foundation

Legal name

Angelman Syndrome Foundation

Website

https://angelman.org

Company type

Private

Founded year

1992

Operating status

Operating

Short description

The Angelman Syndrome Foundation is a U.S. nonprofit founded in 1992 and headquartered in Aurora, Illinois, dedicated to Angelman syndrome through family support, a global ASF Clinic network, the LADDER research database, and research grant funding for therapeutic development.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy and Research Funding

NAICS

Other Individual and Family Services (624190), Grantmaking Foundations (813211), Grantmaking and Giving Services (8132)

SIC

Services-Social Services (8300), Services-Membership Organizations (8600)

akta.pro primary industry

Community Foundations (BPAGAKAB)

akta.pro secondary industries

Family & Parenting Support Services (BPAGAEAC), Family Advocacy, Parent Training & Support Services (EDAJAKAK)

Keywords

• Rare disease advocacy
• Patient support services
• Clinical research funding
• Specialized healthcare clinics
• Family community programs

Headquarters

HQ city

Aurora

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations

Revenue model

1. Donations and Fundraising: ASF generates revenue primarily through donations including online donations, text-to-give (SMS to 44321), ASF Cure Club monthly giving program, Send Sunshine initiative, and shop & support merchandise sales.
2. Events and Programs: Revenue generated from fundraising events including Angelman Strong walks, marathon participation, runDisney events, and ASF Family Conference registrations.
3. Grants and Awards Funding: ASF provides research grants up to $100,000 per year to researchers, with annual submission deadlines on August 15th and funding dispersed in January. ASF allows 10% indirect rate on grants.

Go-to-market motion3 records

Distribution channels4 records

Marketing channels8 records

Core offering

The Angelman Syndrome Foundation is a nonprofit patient advocacy organization that supports individuals and families affected by Angelman syndrome through free family support services, a worldwide network of specialized ASF Clinics, and research funding grants of up to $100,000 per year to investigators. It operates the LADDER research database aggregating global Angelman and Dup15q patient data, runs the LADDER Learning Network connecting expert clinicians and researchers, and hosts community engagement programs including Angelman Strong walks, the ASF Family Conference, and the ASF Family Fund financial assistance program.

Product overview

The Angelman Syndrome Foundation (ASF) operates as a non-profit patient advocacy organization rather than a technology product company. Its core offerings include the Contact Registry for family registration, the LADDER Learning Network and Database for research data sharing, and a network of ASF Clinics providing specialized clinical care. Additional programs include the ASF Family Conference, Angelman Strong fundraising events, the Clinical Trial Excellence Resource for research readiness, the ASF Cure Club donation program, and the ASF Family Fund grant program. These services work together to advance Angelman syndrome awareness, support families, and accelerate therapeutic development through research funding and clinical trial infrastructure.

Differentiator

Problem solved

Functional benefit

Products and services

• ASF Clinics A worldwide network of specialized clinics offering expert healthcare by clinicians who understand Angelman syndrome, with locations across North America, Europe, South America, and the Middle East.
• LADDER Learning Network A global multi-site collaborative connecting expert clinicians, researchers, and families to improve Angelman syndrome care and accelerate research, linking providers to share insights on complex cases and connecting patients to clinical trials.
• LADDER Database A database aggregating information about Angelman and Dup15q syndromes from multiple sources including the Angelman Natural History Study, ASF Clinics, global registries, and research studies, accessible to physicians, researchers, and pharmaceutical partners.
• Contact Registry An online registration form collecting family information to maintain records and provide personalized support, resources, and research updates to families affected by Angelman syndrome. Newly diagnosed families receive information packets upon registration.
• ASF Family Conference An annual conference bringing together Angelman families, researchers, and clinicians for education, networking, and community support, featuring scientific sessions and family activities.
• Angelman Strong Events A nationwide walk event series raising awareness and funds for Angelman syndrome research and family support, held at approximately 50 locations annually.
• ASF Clinical Trial Excellence Resource A comprehensive guide supporting clinical trial readiness and promoting patient-focused, high-quality research in Angelman syndrome, covering practical information about AS, research operations, patient engagement, and family-centered considerations.
• ASF Cure Club A monthly giving program allowing donors to contribute recurring donations in support of Angelman syndrome research and family support programs.
• ASF Family Fund A grant program allowing families to apply for financial assistance to access resources improving quality of life for individuals with Angelman syndrome, with application cycles in October and April each year.

Quantifiable outcome

• Phase 3 enrollment completed by Ultragenyx for GTX-102
• +3 more outcomes

Named customers3 records

Segments5 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature1 record

Partnerships

Nine partnerships are on record, tiered major, core and minor.

• Erasmus Angelman ClinicmajorStrategic or Co-development Partner · 1 January 2026Partnership with Erasmus MC Sophia Children's Hospital to launch the International Clinic Network, expanding access to expert clinical care and strengthening research readiness across Europe.
• FAST (Foundation for Angelman Syndrome Therapeutics)coreStrategic or Co-development Partner · 1 April 2025Co-hosted the EL-PFDD meeting with hundreds of families, caregivers, researchers, FDA representatives, and industry partners. Jointly submitted Voice of the Patient Report to FDA. Also co-hosted inaugural AS Congressional Advocacy Day in March 2024.
• Simplicity's Protected TomorrowsminorStrategic or Co-development Partner · 1 June 2024Partnership to support families with compassionate planning, providing resources and support for future care planning for individuals with Angelman syndrome.
• ASF Canada (formerly Canadian Angelman Syndrome Society)coreStrategic or Co-development Partner · 1 April 2023Canadian organization became ASF Canada in April 2023, strengthening family support throughout North America through collaboration with similar mission organizations.
• Dup15q AlliancecoreStrategic or Co-development Partner · 1 January 2020Combined clinical networks to form the LADDER Learning Network, helping those living with 15q syndromes and making clinics accessible to more people. Also collaborated on the LADDER database project.
• ABOM (Angelman Syndrome Biomarkers and Outcome Measures Consortium)coreStrategic or Co-development PartnerCollaborative initiative focused on identifying, validating, and standardizing biomarkers and clinical outcome measures for Angelman syndrome. Brings together researchers, clinicians, and industry stakeholders.
• RTI InternationalcoreStrategic or Co-development PartnerNonprofit research institute that created and hosts the LADDER database platform, offering caregivers access to information about patients living with Angelman or Dup15 syndromes.
• Autism BrainNetminorOthersPostmortem brain tissue donation program for autism and neurodevelopmental research. Several donations have come from the Angelman syndrome community.
• EURORDISminorGTM or Marketing PartnerGlobal organization dedicated to rare disease advocacy. CAB members trained with EURORDIS to effectively engage in conversations with researchers, clinicians, and policymakers.

Scale indicators7 records

Recent moves9 records

Expansion highlights5 records

Direct peers

• Foundation for Angelman Syndrome Therapeutics (FAST): Direct peer and co-advocacy partner of ASF, focused exclusively on Angelman syndrome therapeutics. Pursues the same patient-population fundraising, research grants, and clinical-trial readiness mission; ASF and FAST already co-host EL-PFDD and Congressional Advocacy Day.
• Dup15q Alliance: Sister-organization for Dup15q syndrome and ASF's core co-development partner on the LADDER Learning Network and LADDER database. Operates a similar rare-chromosomal-disorder foundation model serving a comparable neurodevelopmental patient population.
• Parent Project Muscular Dystrophy (PPMD): Disease-specific nonprofit running a comparable end-to-end rare-disease playbook: certified clinic network, contact registry, research grants, family conference, and annual advocacy days. Closest operational analog to ASF's model outside the Angelman space.
• Cure SMA: Spinal muscular atrophy patient-advocacy foundation that funded early research leading to approved gene therapies. Operates a similar research-grant, family-support, and clinical-trial-readiness stack as ASF and is a benchmark for outcome-driven rare-disease foundations.
• National Fragile X Foundation: Patient-advocacy foundation for Fragile X syndrome, a neurodevelopmental rare disorder with overlapping clinical features, family-support needs, and multi-clinic-network structure. Directly comparable in mission, clinic model, and donor base to ASF.
• Tuberous Sclerosis Alliance: Rare-disease foundation supporting a multi-system genetic disorder with an active clinical trials network, research grants, and family-support programs. Comparable in scale, structure, and pharma-partnership approach.
• Rett Syndrome Research Trust: Focused research and family-advocacy foundation for Rett syndrome with a similar genetic-neurodevelopmental patient base and a clinic-network-plus-research-grant operating model. Closely comparable in therapeutic-pipeline maturity and donor engagement tactics.
• Charcot-Marie-Tooth Association: Rare inherited neurological disorder foundation operating a center-of-excellence clinic network, research grants, and patient registry model highly analogous to ASF's LADDER + ASF Clinics stack.

Broad incumbents

• National Organization for Rare Disorders (NORD): Largest US umbrella advocacy body for rare diseases. Provides policy, research-grant infrastructure, and patient-registries used by ASF's stakeholder community; serves as the broad-incumbent reference point for how ASF positions within the rare-disease advocacy landscape.
• EURORDIS – Rare Diseases Europe: European umbrella organization for rare-disease patient groups. ASF's CAB members have trained with EURORDIS and ASF has clinics across Europe; comparable as the continental analog to NORD and a natural alliance partner.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xtwitter.com/angelman
• YouTubeyoutube.com/user/AngelmanSyndromeFdn
• Facebookfacebook.com/AngelmanSyndromeFoundation
• LinkedInlinkedin.com/company/angelman-syndrome-foundation
• Instagraminstagram.com/angelman_asf

Revenue estimate

Valuation estimate

Number of profiles

Profiles11 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Angelman Syndrome Foundation