Rare Village Foundation is a 501(c)(3) nonprofit fiscal sponsor dedicated to transforming the future of rare disease treatment by empowering families affected by rare and ultra-rare genetic disorders. The organization supports family-led fundraising, research readiness, storytelling, and the infrastructure needed to advance promising family-driven research into clinical trials.
Rare Village Foundation centers its grantmaking on rare and ultra-rare genetic disorders, with a clear tilt toward family-led research and the path from preclinical work to clinical trials. In 2025, its largest recent grant went to Henry Ahc in Colchester, Vermont for research, followed by a large award to Andelyn Biosciences in Columbus, Ohio for research. Those awards sit alongside support for organizations that help move rare-disease science forward through the infrastructure around it, including fundraising, communications, and research readiness. The foundation’s recent grants show repeated backing for research teams, hospitals, universities, and biotech groups working on rare-disease projects. Its portfolio includes grants to Charles River Discovery Research in Reading, Massachusetts, Evrlum Bio in Austin, Texas, and Sonshine Foundation in New York, New York, all labeled for research. That mix reflects a funder that is not limited to one type of recipient; it supports both scientific development and the family-facing systems that help rare-disease projects advance. As a public charity and fiscal sponsor, Rare Village Foundation also operates programs that host family-led fundraising funds and partnerships tied to its broader mission.
Research funding is the clearest theme in the recent grants. Rare Village Foundation gave $304,722 to Charles River Discovery Research in Reading, Massachusetts for research, and $120,550 to Unravel Bioscience in Medford, Massachusetts for research, showing support for translational and discovery-stage work. The foundation also backs academic and hospital-based science. It awarded $109,091 to Northwestern University in Evanston, Illinois for research and $50,000 to Seattle Childrens Hospital in Seattle, Washington for research. That pattern suggests interest in both university labs and clinical settings. Family-centered rare-disease work appears in the grant list as well. Rare Village Foundation gave $422,467 to Finding Hope for Frss1l in Fort Collins, Colorado for research, and the organization’s program design includes family-led fundraising funds for children with rare and ultra-rare genetic disorders. It also supports infrastructure through storytelling and outreach tied to rare disease families.
$3.1M
$3.3M
$3.7M
$2.4M
Most grants fall between $28K and $109K, with a median of $56K.
25th Percentile
$28K
Median
$56K
75th Percentile
$109K
About 13% of grants go to recipients in CA.
Top 4 recipient countries by grant volume for Rare Village Foundation.
| Rank | Country | Grants | Total | Share |
|---|---|---|---|---|
| 1 | United StatesDomestic | 31 | $3.9M | 91.2% |
| 2 | France |
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Rare Village Foundation’s recent grants cluster around a median size of $55,750, with a lower quartile of $27,938 and an upper quartile of $108,505. The largest awards are much higher than the center of the distribution, including a $842,626 grant in 2025 and several six-figure grants in the same year. The record shows repeat giving to some recipients across years: Northwestern University appears in both 2023 and 2025, and Rarebase Pbc appears in 2023 more than once. That suggests some ongoing relationships rather than one-off awards only. The foundation is a public charity and does not fund individuals. It also accepts unsolicited participation through its active partnership and start-a-fund programs, including family-led fundraising support.
Most grants go to recipients in the United States, which account for 31 grants, or 91.2% of the listed distribution. Outside the US, the recipient countries are Slovenia, Italy, and France, with one grant each. Among US recipients, Pennsylvania appears most often, reflecting the top state by grant count. The grants are spread across many cities, including Colchester, Columbus, Reading, Austin, New York, Palo Alto, Philadelphia, and Seattle. Texas receives 12% of grants to recipients in the foundation’s HQ state, while the giving footprint extends well beyond Texas.
It funds research and rare-disease infrastructure for families affected by rare and ultra-rare genetic disorders. The recent grants list includes universities, hospitals, biotech companies, foundations, and research organizations, with many awards labeled for research.
The typical grant size is $55,750 at the median. The middle half of grants falls between $27,938 at p25 and $108,505 at p75.
Yes. Its active programs include Become a Visionary, a partnership program, and Start a Fund, which hosts and administers family-led fundraising funds. Both are marked as accepting unsolicited participation.
Yes. Northwestern University appears in both 2023 and 2025, and Rarebase Pbc appears in 2023 more than once. The grant history shows some recipients receiving support across multiple years.
The foundation gives nationally, with 31 grants in the United States, or 91.2% of the listed distribution. Outside the US, there is one grant each in Slovenia, Italy, and France, and Pennsylvania is the top state by grant count.
2026
Source: IRS Form 990-PF, fiscal year 2026.
| 1 |
| $18K |
2.9% |
| 3 | Italy | 1 | $11K | 2.9% |
| 4 | Slovenia | 1 | $11K | 2.9% |
Recipient country reflects the grantee's headquarters per IRS 990-PF and Schedule F filings, not the program's implementation country.
Current and upcoming funding from Rare Village Foundation that your nonprofit may be able to apply for.
Who can apply: Families or family-led nonprofit efforts seeking to raise funds for research, clinical trials, or treatment development for a child(ren) with a rare or ultra-rare genetic disorder; must contact Rare Village to initiate the fund and sign an agreement.
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Create a free accountDeadlines and eligibility are summarized from public sources and may change — always confirm the details on the funder's official application page before applying.
Most recent grants reported to the IRS.
| Recipient | Location | Amount | Year | Purpose |
|---|---|---|---|---|
| FOR HENRY AHC | COLCHESTER, VT | $842,626 | 2025 | RESEARCH |
| ANDELYN BIOSCIENCES | COLUMBUS, OH | $599,152 | 2025 | RESEARCH |
| CHARLES RIVER DISCOVERY RESEARCH | Reading, MA | $304,722 | 2025 | RESEARCH |
| EVRLUM BIO | Austin, TX | $291,521 | 2025 | RESEARCH |
| SONSHINE FOUNDATION | NEW YORK, NY | $161,526 | 2025 | RESEARCH |
| PERLARA PBC | South San Francisco, CA | $130,727 | 2025 | RESEARCH |
| UNRAVEL BIOSCIENCE | Medford, MA | $120,550 | 2025 | RESEARCH |
| NORTHWESTERN UNIVERSITY | EVANSTON, IL | $109,091 | 2025 | RESEARCH |
| RAREBASETRANSCRIPTA BIO | PALO ALTO, CA | $105,288 | 2025 | RESEARCH |
| UNIVERSITY OF MISSOURI | COLUMBIA, MO | $91,488 | 2025 | RESEARCH |
| LA JOLLA LABS | El Cajon, CA | $75,831 | 2025 | RESEARCH |
| SEATTLE CHILDRENS HOSPITAL | SEATTLE, WA | $50,000 | 2025 | RESEARCH |
| ICHAN SCHOOL OF MEDICINE | NEW YORK, NY | $38,000 | 2025 | RESEARCH |
| UNIVERSIT OF PENN | PHILADELPHIA, PA | $35,027 | 2025 | RESEARCH |
| IXCELLS | SAN DIEGO, CA | $27,621 | 2025 | RESEARCH |
| UNIVERSITY OF STRASBURG | STRASBOURG | $18,046 | 2025 | RESEARCH |
| CANOPY LIFE SCIENCES | DANBURY, CT | $11,238 | 2025 | RESEARCH |
| OSPEDALE SAN RAFFALE | MILAN | $11,237 | 2025 | RESEARCH |
| CTNNB1 FOUNDATION | LLUJBAJANA | $11,153 | 2025 | RESEARCH |
| BOSTON CHILDRENS HOSPITAL | Boston, MA | $10,000 | 2025 | RESEARCH |
| CHILDRENS HOSPITAL | EL PASO, TX | $5,936 | 2025 | RESEARCH |
| TALUS BIOSCIENCE | Seattle, WA | $5,000 | 2025 | RESEARCH |
| ST JOHN REGIONAL HOSPITAL | OXNARD, CA | $3,980 | 2025 | RESEARCH |
| VARIANTYX | Framingham, MA | $3,700 | 2025 | RESEARCH |
| ATXPC FOUNDATION | PLEASANTVILLE, NY | $3,400 | 2025 | RESEARCH |
| CH NEUROLOGY | El Paso, TX | $2,289 | 2025 | RESEARCH |
| FINDING HOPE FOR FRSS1L | FORT COLLINS, CO | $422,467 | 2023 | RESEARCH |
| RAIDEN SCIENCE | BEAVERTON, OR | $179,021 | 2023 | RESEARCH |
| UMASS CHAN MEDICAL SCHOOL | WORCESTER, MA | $85,000 | 2023 | FUND RESEARCH |
| RAREBASE PBC | PALO ALTO, CA | $58,000 | 2023 | RESEARCH |
| NORTHWESTERN UNIVERSITY | EVANSTON, IL | $53,500 | 2023 | RESEARCH |
| DREXEL UNIVERSITY | PHILADELPHIA, PA | $28,000 | 2023 | RESEARCH |
| MAOD FOUNDATION | GALVESTON, TX | $27,750 | 2023 | RESERARCH |
| NEIL HACKETT | PALO ALTO, CA | $1,000 | 2023 | RESEARCH |
FOR HENRY AHC
$842,626RESEARCH
ANDELYN BIOSCIENCES
$599,152RESEARCH
CHARLES RIVER DISCOVERY RESEARCH
$304,722RESEARCH
EVRLUM BIO
$291,521RESEARCH
SONSHINE FOUNDATION
$161,526RESEARCH
PERLARA PBC
$130,727RESEARCH
UNRAVEL BIOSCIENCE
RESEARCH
NORTHWESTERN UNIVERSITY
$109,091RESEARCH
RAREBASETRANSCRIPTA BIO
$105,288RESEARCH
UNIVERSITY OF MISSOURI
$91,488RESEARCH
LA JOLLA LABS
$75,831RESEARCH
SEATTLE CHILDRENS HOSPITAL
$50,000RESEARCH
ICHAN SCHOOL OF MEDICINE
$38,000RESEARCH
UNIVERSIT OF PENN
$35,027RESEARCH
IXCELLS
$27,621RESEARCH
UNIVERSITY OF STRASBURG
$18,046RESEARCH
CANOPY LIFE SCIENCES
$11,238RESEARCH
OSPEDALE SAN RAFFALE
$11,237RESEARCH
CTNNB1 FOUNDATION
$11,153RESEARCH
BOSTON CHILDRENS HOSPITAL
$10,000RESEARCH
CHILDRENS HOSPITAL
$5,936RESEARCH
TALUS BIOSCIENCE
$5,000RESEARCH
ST JOHN REGIONAL HOSPITAL
$3,980RESEARCH
VARIANTYX
$3,700RESEARCH
ATXPC FOUNDATION
$3,400RESEARCH
CH NEUROLOGY
$2,289RESEARCH
FINDING HOPE FOR FRSS1L
$422,467RESEARCH
RAIDEN SCIENCE
$179,021RESEARCH
UMASS CHAN MEDICAL SCHOOL
$85,000FUND RESEARCH
RAREBASE PBC
$58,000RESEARCH
NORTHWESTERN UNIVERSITY
$53,500RESEARCH
DREXEL UNIVERSITY
$28,000RESEARCH
MAOD FOUNDATION
$27,750RESERARCH
NEIL HACKETT
$1,000RESEARCH