Chromosome 18 Registry & Research Society

What Chromosome 18 Registry & Research Society does

The Chromosome 18 Registry & Research Society is a San Antonio, Texas-based 501(c)(3) nonprofit founded in 1990 by Dr. Jannine Cody, focused exclusively on supporting individuals and families affected by Chromosome 18 abnormalities (18p-, 18q-, Tetrasomy 18p, Trisomy 18, Ring 18, and Pitt Hopkins Syndrome). Its operations center on a global family registry of more than 6,000 families, a Clinical Research Center operated in partnership with UT Health Science Center San Antonio that maintains a biobank and produces clinical management guides, and a suite of free member resources including syndrome-specific video libraries, monthly and research e-newsletters, and downloadable educational materials. Community engagement is delivered through regional and syndrome-specific coordinators (experienced parent volunteers), private Facebook groups organized by geography and condition, and recurring events such as the Annual Family Conference, World Chromosome 18 Day (virtual), the Annual Golf Tournament with Starfish Soiree, Starfish Camp, and the Power of 18 fundraising challenge.

The underlying technology stack is modest: a WordPress-hosted website (chromosome18.org) acts as the primary resource hub, donation processing, and event registration surface, supplemented by a GiveLively-powered donation platform, social media properties (Facebook, Instagram, YouTube, LinkedIn), and a relational registry database that tracks member families and supports research recruitment. Distribution is overwhelmingly digital and self-serve: free membership is onramped through the website, with regional coordinators providing field-level support in defined geographies (e.g., the Anama family covering the Great Plains region). There are no APIs, integrations, mobile apps, or proprietary software products.

The revenue model is donation-only — there are no membership fees, service fees, licensing royalties, or commercial product sales. Funding streams are intentionally diversified and include one-time individual donations, year-end 'Phantom Tea & Wine' campaigns, monthly recurring giving ('Chromosome 18 Champion'), planned/legacy gifts and a Legacy Society, Facebook/Instagram and eBay for Charity P2P fundraisers, the Power of 18 challenge, and event proceeds from the golf tournament and annual conference. The organization markets primarily through content marketing, organic social, email, events, and Google Ad Grants, with new member acquisition driven largely by community word-of-mouth and healthcare-provider referrals. Customer/member segments span affected families (primary), healthcare and medical professionals, educators/special-education professionals, and self-advocate adults with Chromosome 18 conditions.

Name

Chromosome 18 Registry & Research Society

Legal name

Chromosome 18 Registry & Research Society

Website

https://chromosome18.org

Company type

Private

Founded year

1990

Operating status

Operating

Headcount range

11–50 employees

Short description

Chromosome 18 Registry & Research Society is a 1990-founded 501(c)(3) nonprofit that supports a global network of more than 6,000 families affected by Chromosome 18 conditions through a family registry, a Clinical Research Center with UT Health San Antonio, free educational resources, and community events, funded entirely by donations.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy and Family Support Services

NAICS

Other Individual and Family Services (624190), Child and Youth Services (62411)

SIC

Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Maternal, Child & Family Health Organizations (BPAGACAF)

akta.pro secondary industries

Population Genomics & Preventive Precision Health Programs (HLAAANAL), Family & Parenting Support Services (BPAGAEAC)

Keywords

• Rare chromosome disorder support
• Patient advocacy services
• Family registry services
• Clinical research biobank
• Genetic condition community

Headquarters

HQ city

San Antonio

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Individual Donations: Direct donations from individuals, families, and supporters. The organization receives the vast majority of its funding directly from Chromosome 18 families and their friends and supporters.
2. Planned Giving / Legacy Society: Planned gifts including wills, trusts, endowments, life insurance gifts, real estate agreements, and donor advised fund designations.
3. Year-End Giving Campaigns: Annual year-end giving campaign including 'Phantom Tea & Wine' parties and direct appeals, representing the organization's most important fundraiser.
4. Monthly Giving (Chromosome 18 Champion): Recurring monthly donations from supporters, providing sustainable funding for operations.
5. Social Media Fundraising: Facebook and Instagram fundraisers allowing supporters to create personal fundraising campaigns for birthdays, events, or general support.
6. eBay for Charity: Partnership with eBay allowing supporters to sell items and donate a percentage (10-100%) of proceeds to Chromosome 18.

Pricing tiers

Go-to-market motion2 records

Distribution channels4 records

Marketing channels8 records

Core offering

The organization operates a global Family Registry connecting over 6,000 families affected by Chromosome 18 conditions and runs a Clinical Research Center in partnership with UT Health Science Center San Antonio that maintains a 33-year biobank and produces clinical management guides. It delivers free membership services including regional and syndrome-specific coordinators, video libraries, dosage deletion and duplication maps, newsletters, and signature events such as the Annual Family Conference, World Chromosome 18 Day, Golf Tournament, Power of 18 Challenge, and Starfish Camp.

Product overview

Chromosome 18 Registry & Research Society operates as a unified nonprofit service organization rather than a commercial product company. Its core offerings center on a global family registry connecting over 6,000 families, combined with a Clinical Research Center that maintains a biobank and produces clinical management guides. The organization provides member resources including video libraries, newsletters, and educational materials covering specific Chromosome 18 conditions. Community support is delivered through regional coordinators, private social media groups, and signature events including the Annual Family Conference, World Chromosome 18 Day, Golf Tournament, and Starfish Camp. All programs work together to advance the mission of making Chromosome 18 the first treatable chromosome condition through research, education, and family support.

Differentiator

Problem solved

Functional benefit

Products and services

• Chromosome 18 Family Registry A global registry connecting over 6,000 families affected by Chromosome 18 conditions (18p-, 18q-, Tetrasomy 18p, Trisomy 18, Ring 18, and Pitt Hopkins Syndrome), facilitating research participation and family connection via regional and syndrome-specific coordinators. Available free of charge.
• Clinical Research Center A research center operated in partnership with UT Health Science Center San Antonio that conducts clinical studies on Chromosome 18 conditions, maintains a research biobank, and produces clinical management guides and research newsletters for families and medical professionals.
• Annual Family Conference An annual in-person and virtual conference that brings together Chromosome 18 families for education, support, and community connection, typically held in San Antonio, Texas.
• World Chromosome 18 Day An annual virtual broadcast event hosted on Zoom that connects international Chromosome 18 families for educational sessions, research updates, and syndrome-specific breakout meetings.
• Annual Golf Tournament and Starfish Soiree An annual fundraising event held at Canyon Springs Golf Club in San Antonio, TX, featuring the Starfish Soiree gala, with proceeds supporting Chromosome 18 research and family programs.
• Power of 18 Challenge An 18-day fundraising challenge where participants set personal goals (running, swimming, creative projects) while raising funds for Chromosome 18 research, with a collective $30,000 fundraising target.
• Starfish Camp A camp program providing recreational and educational experiences in an inclusive environment for individuals with Chromosome 18 conditions and their families.
• Legacy Society / Planned Giving Program A planned giving program accepting wills, trusts, endowments, life insurance gifts, real estate agreements, and donor-advised fund designations to support the organization's long-term mission.
• Chromosome 18 Champion Monthly Giving A recurring monthly donation program that provides sustainable operational funding for the organization and its Chromosome 18 family support and research programs.
• Regional Coordinator Program A network of experienced parent volunteers serving as regional and syndrome-specific coordinators who provide personalized guidance, support, and connection to families affected by Chromosome 18 conditions.

Quantifiable outcome

• Network of over 6,000 families worldwide connected through the registry
• +1 more outcomes

Named customers1 record

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature2 records

Partnerships

Four partnerships are on record, tiered core and supporting.

• UT Health Science Center San AntoniocoreStrategic or Co-development PartnerPartnership with UT Health Science Center San Antonio for the Clinical Research Center. The CRC video library is hosted at UT Health. This partnership enables clinical research operations and provides the scientific infrastructure for the organization's research mission.
• Accessibility.WorkssupportingImplementation/ SI/ Consulting PartnerAccessibility audit partner that conducted a comprehensive accessibility audit of the organization's website. Their findings and recommendations guide remediation efforts and ongoing compliance with WCAG 2.1 Level AA standards.
• Southwind FieldssupportingStrategic or Co-development PartnerIndependent living community in San Antonio, Texas that provides educational content on post-high school transition and independent living resources for Chromosome 18 families through video content on the organization's platform.
• GiveLively (Powered by Network for Good)supportingTechnology or IntegrationOnline donation platform used for processing donations, event registrations, and recurring giving programs including the Power of 18 challenge.

Scale indicators4 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• Global Genes: Broad rare disease advocacy and support organization with a global footprint. Competes for donor attention and grant funding, while offering programs that overlap with Chromosome 18's community, education, and research support functions.
• National Organization for Rare Disorders (NORD): Broad incumbent umbrella organization for all rare diseases. NORD competes for the same donor and grant dollars that condition-specific groups like Chromosome 18 depend on, while also offering advocacy and resources that partially substitute for Chromosome 18's offerings.
• Genetic Alliance: Broad incumbent federation of genetic condition support organizations. Provides infrastructure, advocacy, and networking resources that overlap with Chromosome 18's mission, while serving as a potential partner or competitor for grant funding.
• EveryLife Foundation for Rare Diseases: Broad rare disease policy and advocacy organization. Competes for philanthropic and policy mindshare while advancing rare disease research funding that could benefit or substitute for Chromosome 18's research mission.

Direct peers

• 4p- Support Group (Wolf-Hirschhorn Syndrome): Direct peer for another rare chromosomal deletion condition. Operates a family support network and registry for families affected by Wolf-Hirschhorn Syndrome, with a similar condition-specific nonprofit structure.
• SOFT (Support Organization for Trisomy 18, 13 and Related Disorders): Direct peer serving families affected by Trisomy 18, 13, and related chromosomal conditions. Provides family support, medical resources, and conferences in a similar community-led nonprofit model, overlapping meaningfully with Chromosome 18's Trisomy 18 and broader chromosome condition coverage.
• International 22q11.2 Foundation: Direct peer for a different chromosome deletion/duplication condition (22q11.2). Operates a registry, family support network, and research-driven mission for a rare chromosomal condition, providing a structural template comparable to Chromosome 18's model.
• Pitt Hopkins Research Foundation: Direct peer focused specifically on Pitt Hopkins Syndrome, which Chromosome 18 Registry also covers. Operates a similar model with family support, research funding, and clinical guidance, making it a close peer within the same condition community.
• Ring 14 USA: Direct peer supporting families affected by Ring chromosome 14 conditions. A small, condition-specific nonprofit with a family registry, conferences, and research support, structurally analogous to Chromosome 18 Registry.

Regional players

• Unique (Rare Chromosome Disorder Support Group): UK-based peer organization supporting families affected by rare chromosome disorders globally. Operates a similar family support, registry, and information model for rare chromosomal conditions, with primary geographic focus in the UK/Europe but serving families worldwide.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/channel/UCfD6CmWv7vGNpDRPklh4uOQ
• Facebookfacebook.com/chromosome18Registry
• LinkedInlinkedin.com/company/the-chromosome-18-registry-&-research-society
• Instagraminstagram.com/chromosome18reg
• Xx.com/login

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Chromosome 18 Registry & Research Society