Rare Village Foundation

What Rare Village Foundation does

Rare Village Foundation (legal name: The Rare Village Foundation; EIN 83-4699994) is a 501(c)(3) nonprofit headquartered at 6808 Old Glory Court, McKinney, Texas, founded by two rare disease mothers, Gina and Kasey, to act as a fiscal sponsor for families affected by rare and ultra-rare genetic disorders. The organization extends its tax-exempt status to family-led research funds, handling IRS filings and tax receipts, while families create and operate individual fundraising campaigns hosted on the GoFundMe Pro (formerly Classy) platform. Donations are processed through Classy and Stripe, with industry-standard processing fees (approximately 3–4%) going to the payment processors; Rare Village charges no administrative or hosting fees.

The product surface spans fiscal sponsorship, customizable GoFundMe Pro campaigns, a 12-step Research Ready Program guiding families from diagnosis through clinical trial launch, a private Facebook community for peer support, quarterly storytelling workshops, the 25 Million Wishes awareness campaign, and a Visionary Partnership Program for philanthropic donors and industry allies. Marketing and distribution are community-led and event-driven: organic social media, monthly newsletters, awareness campaigns (One Wish Wednesday, Featured Fund Friday), and referral partnerships with NIH, NORD, the Orphan Disease Center, Global Genes, EveryLife Foundation, RDCRN, and The Mighty drive family acquisition and donations.

The revenue model is donations and philanthropy: 100% of donor contributions flow to designated family funds, and the organization's own operating revenue is undisclosed. To date, Rare Village reports supporting 35 rare disease families, raising $10 million in cumulative pass-through funds, and funding 27 hospitals, labs, research, and academic institutions. As a small founder-led nonprofit with no disclosed headcount beyond its two co-founders and no venture or institutional capital, growth is reinvested into programmatic expansion rather than distributed.

Name

Rare Village Foundation

Legal name

The Rare Village Foundation

Website

https://rarevillage.org

Company type

Private

Founded year

2019

Operating status

Operating

Headcount range

1–10 employees

Short description

Rare Village Foundation is a 501(c)(3) nonprofit fiscal sponsor that enables families affected by rare and ultra-rare genetic disorders to raise and manage philanthropic funds for therapeutic research via GoFundMe Pro campaigns, community support, and grant guidance.

Ownership category

akta.pro rank

Product category

Nonprofit Fiscal Sponsorship

NAICS

Grantmaking Foundations (813211), Grantmaking and Giving Services (8132), Religious, Grantmaking, Civic, Professional, and Similar Organizations (813)

SIC

Services-Social Services (8300)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industries

Private Foundations (BPAGAKAA), Disability Services & Independent Living Support (BPAGACAG)

Keywords

• Fiscal sponsorship services
• Rare disease fundraising
• Nonprofit charity services
• Patient advocacy resources
• Philanthropic research support

Headquarters

HQ city

Mckinney

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

Revenue model

1. Donations and Philanthropy: As a 501(c)(3) nonprofit, Rare Village Foundation generates revenue through charitable donations from individuals, philanthropists, and 'Visionary' partners who support rare disease family-led research initiatives.
2. Visionary Partner Program: Philanthropic partnerships with industry allies who contribute to fund storytelling resources, clinical trial support, and grow the portfolio of distinguished philanthropists committed to rare disease families.

Pricing tiers

Go-to-market motion3 records

Distribution channels3 records

Marketing channels7 records

Core offering

Rare Village Foundation provides free 501(c)(3) fiscal sponsorship to rare disease families, extending charitable tax status to family-led research funds. The foundation supplies personalized GoFundMe Pro fundraising campaigns, grant-application guidance, storytelling workshops, and connections to researchers, biotech partners, and advocacy organizations (NIH, NORD, ODC, Global Genes). Donations remain under each family's control until they decide which research projects to sponsor.

Product overview

Rare Village Foundation is a 501(c)(3) nonprofit organization founded by two rare disease mothers to empower families affected by rare and ultra-rare genetic disorders. The organization operates as a fiscal sponsor with an integrated fundraising platform powered by GoFundMe Pro, providing families with the infrastructure to raise funds for research, clinical trials, and treatment development. The core offerings include fiscal sponsorship services, GoFundMe Pro-based fundraising campaigns, the 25 Million Wishes awareness campaign, a 12-step Research Ready Program, a community platform via Facebook group, storytelling resources, and a Visionary Partnership Program for philanthropists. Funds are held until families decide which projects to sponsor, with 100% of donations going directly to the designated charitable purpose.

Differentiator

Problem solved

Functional benefit

Products and services

• Fiscal Sponsorship Services Free 501(c)(3) fiscal sponsorship for rare disease families, extending charitable status to family-led research funds. Services include drafting and signing agreements, collecting banking information, managing tax receipts, and handling all IRS filings on behalf of sponsored families.
• Fundraising Campaigns via GoFundMe Pro
• 25 Million Wishes Awareness Campaign An awareness campaign celebrating the lives of 25 million children in North America living with rare diseases, sharing stories on One Wish Wednesday to raise awareness and inspire action for rare disease families.
• Research Ready Program
• Visionary Partnership Program

Quantifiable outcome

• 35 rare disease families supported through fiscal sponsorship
• +2 more outcomes

Named customers2 records

Segments1 record

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration1 record

Partnerships

Eight partnerships are on record, tiered core and minor.

• GoFundMe Pro (formerly Classy)coreTechnology or IntegrationFundraising technology platform providing online donation processing, campaign management, customizable fund pages, and supporter tracking. All family campaigns are hosted on this platform.
• National Institute of Health (NIH)minorOthersNIH grants referenced as funding resource for rare disease research. Families are directed to apply for NIH grants as part of the fundraising process.
• National Organization for Rare Disorders (NORD)minorOthersNORD grant programs referenced as funding resource for families. Rare Village connects families to NORD's research grant programs and support services.
• Orphan Disease Center (ODC)minorOthersUniversity of Pennsylvania-based organization providing grants for rare disease research. Referenced as a grant opportunity for families.
• Global GenesminorOthersRare disease advocacy organization. Rare Village directs families to Global Genes for the Rare Concierge service, storytelling resources, community connection, and grant opportunities.
• EveryLife Foundation for Rare DiseasesminorOthersAdvocacy organization referenced for Share Your Story webinars and policy advocacy training. Partnerships in storytelling and advocacy education.
• The MightyminorOthersPatient/community storytelling platform where families can share rare disease experiences and connect with others.
• Rare Disease Clinical Research Network (RDCRN)minorOthersNIH-funded network connecting families to research centers. Referenced as a resource for families building scientific teams.

Scale indicators8 records

Recent moves2 records

Expansion highlights5 records

Direct peers

• Orphan Disease Center (University of Pennsylvania): The Orphan Disease Center at UPenn administers grant programs that fund rare disease research, including translational and pilot studies. Rare Village refers families to ODC as a grant pathway, making ODC a downstream grantmaking peer that intersects with Rare Village's mission.
• Global Genes: Global Genes is a rare disease advocacy organization that provides storytelling resources, community connection, and grant opportunities (referenced by Rare Village as a partner). Both organizations share the same core mission of empowering rare disease families through education, advocacy tools, and funding pathways.
• National Organization for Rare Disorders (NORD): NORD is a leading US-based rare disease patient advocacy organization offering research grants, patient assistance programs, and educational resources. Like Rare Village, it operates programs that channel philanthropic and government funding to rare disease families and researchers, though at substantially larger scale.
• Cure SMA: Cure SMA is a disease-specific rare disease foundation that funds research, supports families affected by spinal muscular atrophy, and advocates for treatment access. It exemplifies the type of single-disease foundation that Rare Village's family-led funds often graduate into becoming.
• EveryLife Foundation for Rare Diseases: EveryLife Foundation focuses on policy advocacy, storytelling workshops, and federal funding for rare disease research. It is named as a direct partner of Rare Village for advocacy education and Share Your Story webinars, indicating overlapping programming for rare disease families and caregivers.
• Rare Disease Clinical Research Network (RDCRN): RDCRN is an NIH-funded network connecting patients with rare diseases to clinical research centers. Rare Village refers families to RDCRN as a resource for building scientific teams, positioning RDCRN as a peer in the rare disease research enablement ecosystem.
• Children's Tumor Foundation: Children's Tumor Foundation is a disease-specific (neurofibromatosis) rare disease foundation that combines research funding, family support, and advocacy. It represents the model of an established rare disease foundation that operates programs comparable to Rare Village's family-led research funding approach.

Regional players

• EURORDIS - Rare Diseases Europe: EURORDIS is a European alliance of rare disease patient organizations serving as the EU counterpart to NORD. It provides similar community, advocacy, and policy services to Rare Village but operates exclusively across European jurisdictions, making it a regional rather than direct competitor.
• Fonds de Recherche en Santé Respiratoire: This is a placeholder - removing. Replaced with: National Institutes of Health (NIH) Office of Rare Diseases

Emerging players

• The Mighty: The Mighty is a patient and caregiver storytelling platform that hosts community stories across health conditions including rare diseases. Listed as a Rare Village partner for storytelling, it represents a broader health community platform that partially overlaps with Rare Village's family connection and narrative-building mission.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Facebookfacebook.com/share/g/1BE1e41iBf
• LinkedInlinkedin.com/company/the-rare-village-foundation

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Rare Village Foundation