Rare Village Foundation
Rare Village Foundation is a public charity based in McKinney, Texas, that supports families of children with rare diseases through fiscal sponsorship, fundraising guidance, advocacy tools, and educational resources. The organization says it helps families connect and work toward research, treatments, and cures.
Rare Village Foundation at a glance
In short: Rare Village Foundation reported $2.1M in grants paid in 2025 (a total; its filing lists no individual grants). Source: 2025 IRS Form 990.
- Grants paid (2025)
- $2,090,899 — reported as a total on the IRS filing, without an itemized list
- -31.9% vs 2024
- Total assets
- $3,322,255
- +63.7% vs 2024
- Revenue (2025)
- $3,660,787
- +4.7% vs 2024
- Net investment income (2025)
- $202
- +15.4% vs 2024
- Expenses (2025)
- $2,368,236
- -24.8% vs 2024
- Latest 990 filing
- Form 990, 2025 View filing
Data from IRS Form 990, 2025; updated September 2026.
How to apply to Rare Village Foundation
- How to Apply
-
Families seeking to start a fund can contact the foundation to begin the process.
- Contact
Mailing address: 6808 Old Glory Ct, Mckinney, TX 75071
Phone: (214) 570-0700
Website: https://rarevillage.org
Application details from Grantable's research on the foundation's public materials; confirm on its website before applying.
Who Rare Village Foundation funds
How this funder distributes its grants
Grant Size Distribution
38 grants across all recorded years
The most common grant size was under $50K: 18 grants of 38 (47%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
States
Cities
How Rare Village Foundation gives
- Giving grew 137% from 2021 to 2024. Method
From the foundation's IRS Form 990 filings. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2021 to 2025, annual grant giving ranged from $855K (2022) to $3.1M (2024). In 2025 it reported $2.1M in grants paid, as a total without an itemized list.
Hatched bars: grants paid as reported on the IRS filing, which lists no individual grants for that year.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| For Henry AHC Colchester, VT | Research | $842,626 |
| Andelyn Biosciences Columbus, OH | Research | $599,152 |
| Charles River Discovery Research Reading, MA | Research | $304,722 |
| Evrlum Bio Austin, TX | Research | $291,521 |
| Sonshine Foundation New York, NY | Research | $161,526 |
| Perlara PBC South San Francisco, CA | Research | $130,727 |
| Unravel Bioscience Medford, MA | Research | $120,550 |
| Northwestern University Evanston, IL | Research | $109,091 |
| Rarebasetranscripta Bio Palo Alto, CA | Research | $105,288 |
| University of Missouri Columbia, MO | Research | $91,488 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Net Investment Income |
|---|---|---|---|---|---|---|
| 2025 | $3,322,255 | $3,660,787 | $2,368,236 | $2,090,899 | Total only | $202 |
| 2024 | $2,029,704 | $3,496,194 | $3,147,966 | $3,069,149 | 26 | $175 |
| 2023 | $1,681,476 | $2,626,190 | $2,147,205 | $2,126,374 | Total only | $1,100 |
| 2022 | $1,202,491 | $1,374,746 | $1,130,788 | $854,738 | 8 | $245 |
| 2021 | $958,533 | $2,314,057 | $1,389,893 | $1,296,336 | 4 | $21 |
| 2020 | $84,368 | $38,873 | $42,932 | — | — | — |
"Total only": grants paid as reported on the IRS filing, which lists no individual grants for that year.
Research compiled by Grantable AI from public sources. Last updated September 2026.
Mission & Focus Areas
The foundation’s stated mission is “to fight for cures for rare diseases and empower individuals with rare diseases to live their best lives through local community education, inspiring advocacy, and timely connection to critical research that leads to cures.”
Its resources address areas including caregiver support, community connections, research, and navigating a rare disease diagnosis. The foundation’s reported 2024 grants included Northwestern University, whose mission is to advance teaching, research, and student growth, and Children’s Hospital Inc., whose mission includes pediatric healthcare, patient care, education, research, and child advocacy.
Grantmaking
In 2024, the foundation reported 26 grants totaling $3,069,149, an average of about $118,044 per grant. Notable recipients included Northwestern University, which received $109,091, and Children’s Hospital Inc., which received $5,936. The foundation’s website describes a process for families to start a fund, including signing an agreement and providing banking information and photos. It also says the foundation may provide fiscal sponsorship at its discretion and may retain administrative fees as set out in program agreements.
Leadership & Key People
Leadership team and compensation from IRS filings
The 2025 filing lists Gina Hann as vice president, secretary, and director; Kasey Woleben as president and director; Amy Sowell as treasurer and director; and Amber Freed as director.
Rare Village Foundation is led by Kasey Wolleben, President Director since 2024 (on filings since 2020); none of the 4 officers listed in 2025 report compensation.
Officers on the 2025 filing
Kasey Wolleben
President Director
Vice President Secretary Director → President Director, 2024
On filings since 2020
10 hrs/week
No compensation reported
Amber Freed
Director
On filings since 2020
3 hrs/week
No compensation reported
Amy Sowell
Treasurer Director
On filings since 2020
3 hrs/week
No compensation reported
Gina Hann
Vice President Secretary Director
President & Director → Vice President Secretary Director, 2024
On filings since 2020
10 hrs/week
No compensation reported
Data from IRS Form 990 filings, 2020–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Frequently asked questions about Rare Village Foundation
How much does Rare Village Foundation give each year?
Rare Village Foundation reported $2.1M in grants paid in 2025 on its 2025 IRS Form 990, as a total without an itemized list of grants. In 2024 it gave $3.1M across 26 grants.
How large is Rare Village Foundation?
Rare Village Foundation reported $3.3M in total assets on its 2025 IRS Form 990. Its revenue that year was $3.7M.
What does Rare Village Foundation fund?
The foundation’s stated mission is “to fight for cures for rare diseases and empower individuals with rare diseases to live their best lives through local community education, inspiring advocacy, and timely connection to critical research that leads to cures.” See mission & focus areas ↑
How do I apply for a grant from Rare Village Foundation?
Families seeking to start a fund can contact the foundation to begin the process. Eligibility and process details are in the grantmaking section of this profile. See how to apply ↑
What is Rare Village Foundation's EIN?
Rare Village Foundation's EIN (Employer Identification Number) is 83-4699994. IRS Form 990 filing data is available on this page for 2020–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings. Research dossier generated September 2026.
Data update history
(5)
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2022 (received by the IRS May 11, 2023)
- Updated Form 990-EZ for fiscal year 2020 (received by the IRS June 11, 2021)
- Updated Form 990 for fiscal year 2023 (received by the IRS May 15, 2024)
- Added Form 990 for fiscal year 2025 (received by the IRS May 4, 2026)
- IRS filings on file for fiscal years 2020–2024
Explore Open Grants
Browse active grant opportunities in Rare Village Foundation's focus areas in our free grants database
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Figures come from Rare Village Foundation's IRS filings (methodology). AI-written summaries, news items and logos are not covered by the open licence. Spot an error? Email hello@grantable.co.
Rare Village Foundation down — hundreds of funders to go?