the orphan disease collective

What the orphan disease collective does

The Orphan Disease Collective is a 501(c)(3) nonprofit organization founded in 2019 by Jim and Maria Kelly in Chicago Park, California, after their daughter was born with a rare disease with no cure. The organization's stated mission is to identify leading rare disease researchers across the globe and provide financial support to those whose work shows promise of leading to treatments and cures for orphan diseases — defined under U.S. statute as conditions affecting fewer than 200,000 people nationwide. The Collective does not develop products, software, or proprietary technology; its primary output is grant capital directed to academic and clinical researchers addressing the approximately 7,000 rare diseases affecting 25–30 million Americans, of which 95% have no FDA-approved treatment.

The organization's revenue model is entirely donation-driven: contributions are solicited through its website (orphandiseasecollective.com), with tax-deductible receipts issued to donors. There is no pricing model, fee structure, or commercial offering, and no disclosed revenue figures, donor counts, or grant deployment totals. The Collective operates with 1–10 employees and is led by its two co-founders, both of whom maintain separate primary occupations — Jim Kelly as a Chicago Firefighter, business broker, and Marine Corps veteran; Maria Kelly as a public high school teacher of Culinary Arts.

Distribution of funds occurs through direct grants to identified researchers worldwide, positioning the Collective as an intermediary between individual donors and the global rare disease research community. Marketing and donor acquisition are concentrated in a single channel — the organization's website — which presents the founders' story, explains the orphan disease problem, and routes visitors to a donation link. No social media presence, partnerships, institutional grants, or third-party fundraising platforms are disclosed.

Name

the orphan disease collective

Legal name

The Orphan Disease Collective

Website

https://orphandiseasecollective.com

Company type

Private

Founded year

2019

Operating status

Operating

Headcount range

1–10 employees

Short description

The Orphan Disease Collective is a 501(c)(3) nonprofit founded in 2019 that raises donations through its website and directs grants to leading rare disease researchers worldwide, addressing the roughly 7,000 orphan diseases for which 95% have no FDA-approved treatment.

Ownership category

akta.pro rank

Product category

Nonprofit Rare Disease Research Funding

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Social Services (8300)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industry

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

Keywords

• Rare disease research
• Orphan disease funding
• Nonprofit research grants
• Charitable donations
• Medical research funding

Headquarters

HQ city

Chicago Park

HQ country

United States

HQ region

North America

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations

Distribution channels1 record

Marketing channels3 records

Core offering

The Orphan Disease Collective is a 501(c)(3) nonprofit that raises voluntary charitable donations from individuals and directs those funds as grants to leading rare disease researchers worldwide whose work shows promise for developing treatments and cures for orphan diseases (conditions affecting fewer than 200,000 people nationwide). The organization does not sell products, software, or services; its core activity is donor-driven research funding and donor stewardship.

Product overview

The Orphan Disease Collective is a 501(c)(3) nonprofit organization focused on funding rare disease research. The organization operates as a charitable donation platform that connects donors to researchers working on treatments and cures for orphan diseases. They do not offer commercial products or software services; their primary function is raising and distributing funds to support promising rare disease research globally.

Differentiator

Problem solved

Functional benefit

Quantifiable outcome

• Approximately 7,000 rare diseases affecting 25-30 million Americans

Segments1 record

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Recent moves2 records

Expansion highlights2 records

Broad incumbents

• Genetic Alliance: Genetic Alliance is a broad nonprofit supporting genetic and rare disease communities through advocacy, research, and policy work. It is a broader incumbent in the overlapping rare disease research funding and patient support space.

Direct peers

• Rare Disease Foundation: Rare Disease Foundation funds research and supports families affected by rare diseases. It is a direct peer with an overlapping donor and researcher engagement model.
• Global Genes: Global Genes is a rare disease patient advocacy organization that funds research and builds community for rare disease patients. It is directly comparable given its similar mission of connecting donors to rare disease researchers.
• National Organization for Rare Disorders (NORD): NORD is the largest US-based rare disease patient advocacy organization, funding rare disease research and providing patient support. It is a direct peer given the identical mission of advancing treatments for orphan diseases affecting fewer than 200,000 people.
• EveryLife Foundation for Rare Diseases: EveryLife Foundation advocates for policies and funding to accelerate rare disease therapeutic development. It is a direct peer operating in the same orphan disease research funding and advocacy space.
• Orphan Disease Center (University of Pennsylvania): The Orphan Disease Center at UPenn funds translational research for rare diseases through its Million Dollar Bike Ride and other grant programs. It is a direct peer operating an identical orphan disease research funding model.

Emerging players

• Children's Tumor Foundation: Children's Tumor Foundation funds research for neurofibromatosis and related rare diseases. It is a disease-specific peer demonstrating the focused rare-disease research funding model.
• Cystic Fibrosis Foundation: CFF is a disease-specific research funding powerhouse focused exclusively on cystic fibrosis. It serves as a comparable model for how focused rare disease research funding can scale and produce FDA-approved therapies.

Regional players

• EURORDIS - Rare Diseases Europe: EURORDIS is the European equivalent of NORD, representing rare disease patients and funding research across Europe. It is a regional peer serving a similar mission in a different geography.

Others

• National Institutes of Health (NCATS / ORDR): The NIH's NCATS Office of Rare Diseases Research is a federal counterpart that funds and coordinates rare disease research. It is an adjacent enabling institution that defines orphan disease criteria and sets the broader funding landscape in which the Collective operates.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat2 records

Key risks6 records

Key highlights6 records

Customer concentration

• LinkedInlinkedin.com/company/the-orphan-disease-collective

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about the orphan disease collective