Osteogenesis Imperfecta Foundation

What Osteogenesis Imperfecta Foundation does

The Osteogenesis Imperfecta Foundation (OIF), founded in 1970 and headquartered in Gaithersburg, Maryland, is a 501(c)(3) nonprofit and the only voluntary national health organization in the United States dedicated to helping individuals and families affected by osteogenesis imperfecta (OI), a rare genetic bone disorder. Its mission spans four pillars: research, education, awareness, and mutual support. The foundation employs approximately 15-20 staff under CEO Tracy Smith Hart and is governed by a board that includes many members with OI or parents of children with OI.

The OIF's core offerings include a medically verified Information Library of factsheets and videos; three life-stage toolkits (New Diagnosis, Adult Health, and School-Aged); an OI Clinic Directory; the OI Registry for research participation; biennial National Conferences (the next scheduled for July 2026 in Orlando, FL, drawing 600+ attendees); TeleECHO education series for medical professionals; and financial assistance through the Impact Grant Program, Cranston College Scholarship, and Kasper Kendall Conference Scholarships. The organization supports research via postdoctoral fellowships and seed grants, having cumulatively invested more than $3.3 million since 1970, and partners with the Brittle Bone Disorders Consortium across major medical centers and hosts the Rare Bone Disease Alliance.

The foundation is funded through a diversified mix of individual donations (with preset tiers of $25, $50, $100, $500, $1,000 and recurring options), membership dues, branded merchandise sales (wristbands, apparel, books, ornaments), and event fundraising including galas, golf tournaments, and the National Unbreakable Spirit Walk-n-Wheel. Distribution occurs directly via the oif.org website, Bonelink phone line, email, social media channels, in-person events, and mail, with the organization reaching 11,000+ information requests annually. International linkages exist with OIFE (Europe), Brittle Bone Society (UK), and Canadian OI Society, alongside domestic advocacy memberships in NORD and the National Health Council.

Name

Osteogenesis Imperfecta Foundation

Legal name

The Osteogenesis Imperfecta Foundation, Inc.

Website

https://oif.org

Company type

Private

Founded year

1970

Operating status

Operating

Headcount range

11–50 employees

Short description

The Osteogenesis Imperfecta Foundation is the only US national health nonprofit dedicated to osteogenesis imperfecta, providing medically verified education, support toolkits, conferences, research grants, and an OI Registry for patients, families, and medical professionals across the rare-disease community.

Ownership category

akta.pro rank

Product category

Rare Disease Advocacy Services

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Health Services (8000), Services-Social Services (8300)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• Rare disease advocacy
• Patient support services
• Medical research funding
• Health education resources
• Community support programs

Headquarters

HQ city

Gaithersburg

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, Others

Revenue model

1. Individual Donations: The foundation receives donations from individuals through direct mail, online giving, and the website. The donate page offers preset amounts ($25, $50, $100, $500, $1000) and custom amounts with options for one-time or recurring donations.
2. Membership Program: The OI Foundation offers a membership program where members receive benefits and contribute financially to support the organization.
3. Merchandise Sales: The foundation operates an online shop selling branded merchandise including apparel, mugs, tote bags, books, and awareness items (wristbands, ornaments). Products include OIF Unbreakable Spirit branded items.
4. Event Fundraising: The organization hosts fundraising events including golf tournaments, galas (Boots & Bling for Better Bones), and the National Unbreakable Spirit Walk-n-Wheel. Events have ticket prices ranging from $75 to $2,500.
5. Research Grants and Funding: Since 1970, the OI Foundation has invested more than $3.3 million in research funding, supporting postdoctoral fellowships, seed grants, the OI Registry, and Linked Clinical Research Centers.

Pricing tiers

Go-to-market motion1 record

Distribution channels5 records

Marketing channels8 records

Core offering

The OI Foundation provides educational toolkits, an annual national conference, an OI Clinic Network, a patient Registry, a TeleECHO clinician education series, and an Information Network peer-support program, while funding osteogenesis imperfecta research through grants. The organization serves individuals and families affected by OI, the medical professionals who treat them, and researchers studying bone fragility disorders, with resources delivered online, by phone/email, and in person.

Product overview

The Osteogenesis Imperfecta Foundation is a non-profit health organization offering a comprehensive suite of educational resources and support programs for individuals and families affected by OI. The core offerings include the OI Information Library containing factsheets, publications, and video resources; three major toolkits (New Diagnosis Toolkit, Adult Health Toolkit, and School-Aged Toolkit) addressing different life stages; the OI Clinic Directory helping families find experienced medical professionals; and the biennial National Conference bringing together over 600 community members. The Foundation also supports research through the OI Registry and research grant opportunities, operates TeleECHO educational series for medical professionals, and hosts fundraising events including the Unbreakable Spirit Walk-n-Wheel and golf tournaments. Financial assistance programs include the Impact Grant Program.

Differentiator

Problem solved

Functional benefit

Brands

• Unbreakable Spirit: Brand used for fundraising events and merchandise including the Unbreakable Spirit Walk-n-Wheel, Unbreakable Spirit Golf Tournament, and various merchandise items like wristbands, scarves, snowflake ornaments, and t-shirts.

Products and services

• School-Aged Toolkit Educational resource for parents and caregivers of school-aged children with osteogenesis imperfecta, providing information to support school participation and daily life.
• Adult Health Toolkit Educational resource addressing health and life-management topics for adults living with osteogenesis imperfecta.
• New Diagnosis Toolkit Resource for individuals and families who have recently received an osteogenesis imperfecta diagnosis, offering introductory medical and support information.
• OIF National Conference
• OI Clinic Network
• OI Clinic Directory
• OI Registry
• TeleECHO Series
• Information Network
• National Unbreakable Spirit Walk-n-Wheel
• Unbreakable Spirit Golf Tournaments
• Membership Program
• OI Foundation Merchandise Shop
• OI Foundation Research Grant Program
• Impact Grant Program

Named customers3 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

Partnerships

Ten partnerships are on record, tiered core and secondary.

• Rare Bone Disease AlliancecoreStrategic or Co-development PartnerThe OI Foundation serves as the host organization for the Rare Bone Disease Alliance, a collaborative network advancing research and care for rare bone diseases. The Alliance includes a TeleECHO series and facilitates research collaboration across institutions.
• National Organization for Rare Disorders (NORD)coreOthersThe OI Foundation is a member of NORD, the leading independent organization representing the 25-30 million Americans with rare diseases. Partnership provides advocacy support and resources.
• National Health CouncilcoreOthersThe OI Foundation is a member of the National Health Council, which provides a platform for health advocacy and policy engagement.
• Rare Diseases Network (RaDaR)coreStrategic or Co-development PartnerThe OI Foundation partners with the Rare Diseases Network, participating in patient advocacy group activities and research initiatives.
• Osteogenesis Imperfecta Federation Europe (OIFE)coreStrategic or Co-development PartnerInternational partnership connecting the OI Foundation with European OI organizations for information sharing, research collaboration, and global advocacy.
• Brittle Bone Society (UK)secondaryStrategic or Co-development PartnerPartnership with the UK-based organization serving people with OI in the United Kingdom.
• Canadian OI SocietycoreStrategic or Co-development PartnerPartnership with the Canadian OI Society. The Canadian OI Society supported the translation of OI Foundation toolkits into French.
• Angel FlightsecondaryOthersPartnership providing free air transportation for medically-related needs for OI community members who are financially distressed or have time-critical medical situations.
• Miracle FlightssecondaryOthersPartnership providing free commercial airline flights for children and families needing life-changing medical care not available locally.
• Brittle Bone Disorders Consortium (BBDC)coreStrategic or Co-development PartnerThe OI Foundation supports the BBDC, a research consortium conducting clinical research on osteogenesis imperfecta with sites at major medical institutions including Baylor College of Medicine, UCLA, Hospital for Special Surgery, Children's National Hospital, and Shriners Hospitals.

Scale indicators6 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• EveryLife Foundation for Rare Diseases: US advocacy organization accelerating biotech innovation for rare diseases through policy and patient engagement. Adjacent peer operating in the same rare disease policy and research funding space, with broader disease-agnostic scope.
• Cystic Fibrosis Foundation: US voluntary health organization leading research, drug development, and patient support for cystic fibrosis. Operates a similar model combining research grants, patient registry, clinical care network, and fundraising events for a single rare disease.
• National Organization for Rare Disorders (NORD): US-based umbrella advocacy organization representing the 25-30 million Americans with rare diseases. Broader incumbent peer that OIF is a member of, providing shared advocacy, policy, and research infrastructure across the rare disease landscape.
• Muscular Dystrophy Association: Large US voluntary health organization funding neuromuscular disease research, supporting patients, and providing clinical care. Comparable in operating model (donations, events, research grants, patient services) for a different rare disease category.

Others

• National Health Council: US membership organization providing advocacy and policy support to health-focused voluntary organizations. OIF is a member; serves a comparable member-based infrastructure role in the chronic disease advocacy ecosystem.
• Rare Bone Disease Alliance: Collaborative network advancing research and care for rare bone diseases, hosted by OIF. Operates the Rare Bone Disease TeleECHO series; an adjacent platform peer that OIF is institutionally tied to.
• Brittle Bone Disorders Consortium (BBDC): NIH-funded research consortium conducting clinical research on OI across major US medical centers. OIF is a key partner and patient-recruitment conduit, making it a closely related entity in the OI research ecosystem.

Direct peers

• Brittle Bone Society: UK-based national voluntary health organization dedicated to osteogenesis imperfecta. It is the closest international counterpart to OIF, with overlapping mission, community-led engagement model, and shared patient population, making it a direct functional peer across geography.
• Canadian Osteogenesis Imperfecta Society: Canadian national voluntary health organization dedicated to OI. Direct mission-equivalent peer serving the Canadian OI community, partnered with OIF on translation and information sharing.
• Osteogenesis Imperfecta Federation Europe (OIFE): European umbrella federation of OI patient organizations coordinating research, advocacy, and information sharing across Europe. Direct peer in mission and structure, serving overlapping patient communities with complementary geographic focus.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/OIFoundation
• YouTubeyoutube.com/c/OsteogenesisImperfectaFoundationUS
• Facebookfacebook.com/OsteogenesisImperfectaFoundation
• Instagraminstagram.com/oifoundation
• LinkedInlinkedin.com/company/osteogenesis-imperfecta-foundation

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 Osteogenesis Imperfecta Foundation