What CdLS Foundation USA does

The CdLS Foundation USA (legal name: Cornelia de Lange Syndrome Foundation) is a 501(c)(3) nonprofit organization incorporated in Connecticut in 1981 and headquartered at 30 Tower Lane, Suite 400, Avon, Connecticut. It is the only U.S. organization dedicated to Cornelia de Lange Syndrome, a rare genetic disorder affecting approximately 1 in 10,000 live births. The Foundation currently serves over 3,500 individuals with CdLS in the United States and reaches more than 10,000 families, friends, and professionals worldwide through publications and digital channels. Its mission is to enable early and accurate diagnosis, promote research into the causes and manifestations of CdLS, and help affected individuals make informed decisions throughout their lives.

The Foundation's core service portfolio comprises Family Service Coordination (phone and email support), the Ask the Expert clinical advisory program, multidisciplinary CdLS Clinics, the CoRDS patient registry, the biennial National Family Conference and Scientific Symposium, the Centers for Excellence network (4 clinical and 4 research institutions), and a wide library of clinical, educational, and bereavement resources. Distribution is delivered through a paid staff of 17 supported by 90+ volunteer Regional Coordinators and 55+ Awareness Coordinators. The Foundation's underlying "technology" is fundamentally a human-coordination platform — a curated network of clinical experts, family volunteers, and partner medical institutions — rather than a software product.

The Foundation is funded almost entirely through philanthropic revenue streams: individual donations, community fundraising events (golf tournaments, marathons, awareness dinners — collectively generating approximately one-third of the annual budget), corporate sponsorships and matching gifts, monthly giving, and planned giving. The signature Amber Gaines Memorial Golf Classic has raised over $1 million since inception, and the Team CdLS Chicago Marathon raised $104,000 in 2018. All clinical, educational, and support services are provided at no cost to families. The Foundation surpassed $1 million in annual revenue for the first time in 2010; current financial scale is not publicly disclosed.

Name

CdLS Foundation USA

Legal name

Cornelia de Lange Syndrome Foundation

Website

https://cdlsusa.org

Company type

Private

Founded year

1981

Operating status

Operating

Headcount range

11–50 employees

Short description

The CdLS Foundation USA is the only U.S. nonprofit dedicated to Cornelia de Lange Syndrome, providing free family support, multidisciplinary clinics, a Centers of Excellence network, and research programs to 3,500+ affected individuals and 10,000+ families and professionals nationwide.

Ownership category

akta.pro rank

Product category

Rare Disease Family Support Services

NAICS

Other Individual and Family Services (624190), Individual and Family Services (6241), Child and Youth Services (624110)

SIC

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

akta.pro primary industry

Companion Diagnostics (CDx) Development & Trial Testing Support (HLAGAEAJ)

Keywords

• Rare disease support
• Genetic syndrome services
• Family support nonprofit
• Patient advocacy organization
• Medical education resources

Headquarters

HQ city

Avon, Connecticut

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: The Foundation relies on individual donations from families, friends and community members. The newsletter 'Reaching Out' reaches over 10,000 families, friends and professionals.
2. Special Events Fundraising: Community fundraising events including golf tournaments, charity runs, awareness dinners, obstacle courses, and dress-down days. These events generate approximately one-third of the Foundation's annual budget. Signature events include the Amber Gaines Memorial Golf Classic ($1M+ raised since inception) and Team CdLS Chicago Marathon.
3. Corporate Sponsorships: Corporate giving, matching gifts, and sponsorships. The Foundation has a Stop & Shop Community Bag Program and receives corporate sponsorships for events.
4. Planned Giving: Monthly giving programs and planned giving options for long-term donor support.

Go-to-market motion4 records

Distribution channels4 records

Marketing channels11 records

Core offering

The Cornelia de Lange Syndrome (CdLS) Foundation is a national nonprofit that supports individuals with CdLS, a rare genetic spectrum disorder occurring in approximately 1 in 10,000 live births. It delivers free family support services including Family Service Coordination, Ask the Expert consultations, multidisciplinary CdLS Clinics, the Reaching Out newsletter, and the CoRDS patient registry for research. The Foundation also operates a Centers of Excellence network connecting families to leading clinical and research institutions.

Product overview

The CdLS Foundation offers a comprehensive suite of family support services, clinical resources, and community programs centered around Cornelia de Lange Syndrome. The organization does not operate a traditional software product but provides direct services including Family Service Coordinator support, Ask the Expert consultations with medical experts, CdLS Clinics offering multidisciplinary evaluations, the CoRDS patient registry for research, and the CdLS Centers for Excellence network. Core resources include Critical Care materials, Mental Health Toolkit, Spanish language resources, and International Treatment Protocols. Community programs encompass Family Gatherings, National Family Conference, CdLS Empowerment Team for adults, and the annual Scientific Symposium. Most services are provided at no cost to families.

Differentiator

Problem solved

Functional benefit

Products and services

• Family Services and Support

Quantifiable outcome

• Serves over 3,500 individuals with CdLS in the U.S.
• +3 more outcomes

Named customers5 records

Segments5 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Eight partnerships are on record, tiered core and minor.

• University of Edinburgh - MRC Human Genetics UnitcoreStrategic or Co-development Partner · 1 January 2026University of Edinburgh was designated a CdLS Foundation Research Center of Excellence in June 2026. Dr. Wendy Bickmore's laboratory identified that clinical features associated with BRD4 overlap with CdLS, showing BRD4 and NIPBL co-regulate developmental gene expression. Dr. Bickmore is a Fellow of the Royal Society and National Academy of Sciences (USA).
• Cohen Children's Medical Center / Northwell HealthcoreStrategic or Co-development Partner · 1 January 2026Cohen Children's Medical Center at Northwell Health is the newest designated Center of Excellence. Led by Dr. Ian Krantz with over 20 years of CdLS expertise. The clinic brings together specialists across Genetics, Gastroenterology, Child Development, and Physical Therapy. Research at the Feinstein Institutes focuses on biomarker development and therapeutic strategies with data from approximately 2,000 individuals.
• Shriners Children's Salt Lake CitycoreStrategic or Co-development Partner · 1 January 2016Shriners Children's Salt Lake City is a Clinical Center of Excellence. The clinic brings specialized, multidisciplinary CdLS care to families across the Mountain West, reducing travel distance for families. The annual clinic includes specialists in orthopedics, GI, neurology, genetics, and physical/occupational therapy.
• Children's Hospital of Philadelphia (CHOP)coreStrategic or Co-development Partner · 1 January 2008CHOP is a Clinical and Research Center of Excellence. Research led by the CHOP team resulted in identification of the first genes associated with CdLS (NIPBL, SMC1A, and SMC3). The Center for Cornelia de Lange Syndrome and Related Diagnoses at CHOP provides specialized multidisciplinary care. Dr. Ian Krantz leads the CdLS program at CHOP with over 20 years of experience.
• University of California, IrvinecoreStrategic or Co-development Partner · 1 January 2008UC Irvine is a Research Center of Excellence. In collaboration with researchers at CHOP, the UC Irvine team helped identify NIPBL, enabling molecular diagnosis. The team has developed mouse and zebrafish models of CdLS to explore how the syndrome affects development. Team includes Dr. Arthur Lander, Dr. Anne Calof, and Dr. Thomas Schilling.
• Stowers Institute for Medical ResearchcoreStrategic or Co-development Partner · 1 January 2008Stowers Institute is a Research Center of Excellence. Dr. Jennifer Gerton pursues research into the basic biological functions of the genes that cause CdLS, contributing directly to understanding the molecular basis of the syndrome and identifying pathways that could lead to therapeutic approaches.
• Greater Baltimore Medical CentercoreStrategic or Co-development Partner · 1 January 2000Dr. Antonie Kline established the CdLS clinic at GBMC in 2000, recognizing the need for consistent, specialized care across the lifespan. The clinic provides multidisciplinary care for adolescents and adults with CdLS. GBMC focuses on aging research in CdLS, reflecting commitment to lifespan-oriented care.
• Saint Louis University School of MedicineminorStrategic or Co-development PartnerListed among the original CdLS Centers for Excellence. The St. Louis Children's Hospital CdLS clinic provides families access to specialists in gastroenterology, ophthalmology, genetics, neurology, audiology/ENT, and psychology.

Scale indicators9 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• Global Genes: Allied rare-disease advocacy nonprofit providing toolkits, conferences, and community programs for individual rare-disease foundations including CdLS-like patient support organizations; comparable mission around awareness, family support, and research enablement.
• EveryLife Foundation for Rare Diseases: Policy-focused rare disease advocacy nonprofit that complements disease-specific organizations like CdLS Foundation USA by driving federal legislation, newborn screening, and FDA engagement on behalf of the broader rare disease community.
• National Organization for Rare Disorders (NORD): U.S. umbrella advocacy organization for all rare diseases; directly comparable as a peer nonprofit that supports disease-specific foundations with research grants, policy advocacy, and patient registries, and operates at the same level as CdLS Foundation USA within the rare-disease ecosystem.
• National Down Syndrome Society (NDSS): Single-condition genetic disability advocacy organization delivering family support, professional resources, and a national conference; comparable in delivery model but operates at significantly larger scale than CdLS Foundation USA.
• Autism Society of America: National disability advocacy nonprofit with similar service mix (family support, conferences, information resources, regional affiliates); overlaps structurally with CdLS Foundation USA but serves a far broader and less genetically defined community.

Direct peers

• International Rett Syndrome Foundation: Single rare genetic disorder (Rett Syndrome) advocacy foundation providing family support, research funding, a patient registry, and clinical/scientific conferences; nearly identical operating model to CdLS Foundation USA.
• Parent Project Muscular Dystrophy (PPMD): Single-disease (Duchenne) patient advocacy nonprofit that funds research, runs family conferences, maintains a patient registry, and operates Centers of Excellence; highly comparable to CdLS Foundation USA in scale, mission, and operating model.
• Tuberous Sclerosis Alliance: Patient advocacy organization for a single rare genetic disorder (TSC); runs clinical centers, family conferences, research programs, and an emergency/medical alert program directly analogous to CdLS's Medical Alert Cards and Centers of Excellence.
• CHARGE Syndrome Foundation: Single rare genetic syndrome (CHARGE) patient advocacy foundation supporting families, clinicians, and researchers; comparable in scale, mission, and use of regional coordinators, family conferences, and medical advisory boards.

Others

• CoRDS (Coordination of Rare Disease Studies) at Sanford Research: Patient registry platform that the CdLS Foundation actually uses to connect families with researchers; comparable as an enabling infrastructure partner in the rare disease advocacy ecosystem rather than a competitor.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xtwitter.com/cdlsfoundation
• Facebookfacebook.com/CdLSFoundation
• LinkedInlinkedin.com/company/cdlsfoundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles13 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about CdLS Foundation USA