the international 22q11.2 foundation

What the international 22q11.2 foundation does

The International 22q11.2 Foundation is a 501(c)(3) nonprofit organization founded in 2003 in suburban Philadelphia and currently operating from Matawan, New Jersey. Its mission is to support families and individuals affected by chromosome 22q11.2 differences — deletions, duplications, and related gene variations that affect approximately 1 in 1,000 live pregnancies and an estimated 5 million+ people worldwide. The foundation delivers its services primarily through its website, 22q.org, which functions as a comprehensive resource hub offering multilingual clinical practice guidelines (adult and pediatric), fact sheets on associated health conditions, genetic counseling information, a medical clinic referral directory, and webinar content. It also runs the annual 22q at the Zoo Worldwide Awareness Day, now in its 16th year and operating across 20+ countries.

The foundation's core products include the Faces of Sunshine Calendar (a $25 annual merchandise product), free 22q Info Cards (Z-Cards) for distribution by families and providers, the Health Conditions Explained educational series, and November 22q Awareness Month programming. Celebrity ambassadors including NBA player Devin Booker and NFL player Saquon Barkley provide earned-media amplification. A Medical Advisory Board chaired by Dr. Anne Bassett (University of Toronto; Order of Canada recipient) and Founding Board Member Donna McDonald-McGinn (CHOP 22q and You Center; University of Pennsylvania) anchor clinical credibility.

The organization's revenue model is built on individual charitable contributions (online, mail, and stock-transfer donations), supplemented by merchandise sales (calendar, awareness t-shirts) and small grants from corporate/athlete giving programs. Distribution occurs via the direct-to-consumer website, healthcare provider networks for clinical guideline dissemination, the zoo-based event channel for awareness, and a global volunteer network across 20+ countries. The foundation operates as the primary global organization dedicated specifically to 22q11.2 conditions, partnering closely with the related 22q11.2 Society and the CHOP 22q and You Center on research and clinical initiatives.

Name

the international 22q11.2 foundation

Legal name

International 22q11.2 Foundation, Inc.

Website

https://22q.org

Company type

Private

Founded year

2003

Operating status

Operating

Short description

The International 22q11.2 Foundation is a 501(c)(3) nonprofit that supports families and individuals affected by chromosome 22q11.2 deletion and duplication syndromes. It operates 22q.org, distributing multilingual clinical guidelines and educational resources globally, and runs the annual 22q at the Zoo awareness day across 20+ countries.

Ownership category

akta.pro rank

Product category

Patient Advocacy Nonprofit

NAICS

Voluntary Health Organizations (813212)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industries

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA), Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Rare disease advocacy
• Patient education resources
• Genetic disorder support
• Clinical practice guidelines
• Community awareness events

Headquarters

HQ city

Matawan

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Marketing or Sales, Operations, Others

Revenue model

1. Donations and Charitable Contributions: The foundation receives tax-deductible charitable donations from individuals, families, and supporters. Donations can be made online, by mail, or through stock transfers. The organization is an IRS-approved 501(c)(3) organization.
2. Merchandise Sales: Sale of merchandise including the Faces of Sunshine Calendar and other awareness items. Proceeds benefit the work of the foundation.

Pricing tiers

Distribution channels5 records

Marketing channels10 records

Core offering

The International 22q11.2 Foundation is a nonprofit organization that provides educational resources, multilingual clinical practice guidelines, family support, and global awareness programming for individuals and families affected by chromosome 22q11.2 deletion and duplication syndromes. It distributes free wallet-sized info cards, hosts the annual 22q at the Zoo Worldwide Awareness Day across 20+ countries, and sells awareness merchandise (Faces of Sunshine Calendar, t-shirts) to fund its mission.

Product overview

The International 22q11.2 Foundation operates primarily as a nonprofit web-based organization offering educational resources, clinical guidelines, and community support for chromosome 22q11.2 differences. Its core offerings include the 22q.org website platform with comprehensive information, the Faces of Sunshine Calendar (annual merchandise product), Health Conditions Explained informational series, and the 22q at the Zoo Worldwide Awareness Day event. The foundation also provides Pediatric and Adult Clinical Practice Guidelines with assessment checklists available in multiple languages. Additional resources include free 22q Info Cards (Z-Cards) for families and professionals, webinars, and an online merchandise store.

Differentiator

Problem solved

Functional benefit

Products and services

• 22q.org Website Resource Hub Primary web platform for families, individuals, and professionals seeking information about chromosome 22q11.2 differences, with donation forms, event listings, and downloadable clinical guidelines.
• Faces of Sunshine Calendar Annual calendar featuring 12 individuals with 22q11.2 differences plus a cover image, sold at $25 with proceeds benefiting the foundation's awareness and support work.
• 22q Info Cards (Z-Cards) Free wallet-sized Z-Cards that unfold into eight informative panels about 22q differences, intended for sharing with family, friends, and professionals.
• Adult Clinical Practice Guidelines and Assessment Checklist Multilingual clinical practice recommendations and assessment checklists for managing adults with 22q11.2 deletion syndrome, intended for healthcare providers and families.
• Pediatric Clinical Practice Guidelines and Assessment Checklist Multilingual clinical practice recommendations and assessment checklists for managing children with 22q11.2 deletion syndrome, intended for pediatricians, specialists, and families.
• Health Conditions Explained Series Family-friendly fact sheets explaining the medical conditions associated with 22q differences across multiple body systems, written for non-specialist audiences.
• 22q at the Zoo Worldwide Awareness Day Annual global awareness event held simultaneously at zoos across more than 20 countries, bringing together families, friends, and medical professionals to raise public awareness of 22q11.2 differences.
• Educational Webinar Series Webinar-based educational programming covering 22q management, clinical care, and research updates, intended for affected families and healthcare professionals.
• 22q Online Merchandise Shop E-commerce storefront selling official awareness merchandise including t-shirts, calendars, and other branded items, with proceeds funding the foundation's programs.

Quantifiable outcome

• Prevalence data shows 22q11.2 deletion affects 1 in 1,000 live pregnancies — nearly as common as Down syndrome — yet remains widely unknown
• +2 more outcomes

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Seven partnerships are on record, tiered core and minor.

• Devin Booker (Phoenix Suns)coreGTM or Marketing PartnerNBA player Devin Booker serves as Special Olympics Global Ambassador and partnered with the foundation to host families of children with 22q at NBA games. Booker received the November 2019 NBA Cares Community Assist Award presented by Kaiser Permanente and designated the $10,000 grant portion to the International 22q11.2 Foundation in honor of his sister Mya who has the deletion.
• Saquon BarkleycoreGTM or Marketing PartnerNFL player Saquon Barkley has partnered with the International 22q11.2 Foundation as a celebrity ambassador to help raise awareness and funds for chromosome 22q11.2 differences.
• 22q at the Zoo Participating OrganizationsminorGTM or Marketing PartnerPartnerships with zoos, wildlife parks, and aquariums worldwide that host 22q at the Zoo events. Includes organizations such as Philadelphia Zoo, Toronto Zoo, Sacramento Zoo, and over 50 other locations across 20+ countries.
• CHOP 22q and You CentercoreStrategic or Co-development PartnerThe 22q and You Center at Children's Hospital of Philadelphia (CHOP) is led by Donna McDonald-McGinn, MS, LCGC, who serves as Founding Board Member of the foundation and Chair of the 22q11.2 Society. The center provides clinical care and research for 22q patients.
• 22q11.2 SocietycoreStrategic or Co-development PartnerThe 22q11.2 Society is a related organization that works in partnership with the foundation. Donna McDonald-McGinn serves as Chair of the Society. The organizations collaborate on conferences and research initiatives.
• American Cleft Palate-Craniofacial Association (ACPA)minorGTM or Marketing PartnerThe ACPA awards four college scholarships annually to outstanding students born with cleft or craniofacial conditions, including the Randall/LaRossa College Scholarship Fund honoring pioneers Peter Randall, MD and Don LaRossa, MD from CHOP.
• Max Appeal (UK)minorGTM or Marketing PartnerUK-based organization Max Appeal co-hosts 22q at the Zoo events at Twycross Zoo in Leicestershire, England, supporting awareness efforts in the UK.

Scale indicators7 records

Recent moves7 records

Expansion highlights5 records

Direct peers

• The 22q11.2 Society: Direct peer organization focused on chromosome 22q11.2 differences; partners with the Foundation on conferences and research initiatives, with shared leadership (Donna McDonald-McGinn serves as Chair of the Society).
• Max Appeal: UK-based charity dedicated to 22q11.2 deletion/duplication syndromes; co-hosts 22q at the Zoo events with the Foundation (e.g., Twycross Zoo) and serves a comparable patient/family advocacy mission.
• Unique – Rare Chromosome Disorder Support Group: UK charity supporting individuals and families affected by rare chromosome disorders including 22q11.2; provides overlapping educational resources, family matching, and clinician-facing materials for a similar patient population.
• Chromosome 22 Central: Nonprofit focused on chromosome 22 abnormalities (including 22q11.2); provides family support, information, and advocacy for affected individuals, overlapping materially with the Foundation's mission.

Broad incumbents

• National Organization for Rare Disorders (NORD): Largest US rare-disease umbrella advocacy organization; competes for the same philanthropic dollars and provides broader resources that can substitute for condition-specific organizations like the 22q Foundation.
• Global Genes: Global rare-disease advocacy nonprofit connecting and empowering patient communities; offers tools, events, and corporate partnerships that overlap with the Foundation's awareness and community-building activities.
• Genetic Alliance: US nonprofit coalition of genetic-condition advocacy organizations; operates programs in newborn screening, genetic policy, and patient engagement relevant to the Foundation's prenatal screening advocacy mission.
• EveryLife Foundation for Rare Diseases: US rare-disease policy and advocacy organization; competes for nonprofit funding and policy attention on issues like newborn screening and patient access that intersect with the Foundation's advocacy priorities.

Emerging players

• Children's Hospital of Philadelphia 22q and You Center: Major clinical-research center for 22q11.2 syndromes led by Foundation Founding Board Member Donna McDonald-McGinn; provides medical care and research infrastructure complementary to the Foundation's family-facing resources.
• SOFT (Support Organization for Trisomy 18, 13, and Related Disorders): Nonprofit supporting families affected by trisomy conditions through education, support networks, and advocacy; comparable in mission, structure, and family-support focus though focused on different chromosomal conditions.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks4 records

Key highlights6 records

Customer concentration

• Xtwitter.com/22QFoundation
• YouTubeyoutube.com/channel/UCINl1xEASUH8GnB9R8-7rfA
• Facebookfacebook.com/22QFoundation
• Instagraminstagram.com/22qfoundation/?hl=en

Compliance1 record

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 the international 22q11.2 foundation