The Rare Disease Charitable Foundation
The Rare Disease Charitable Foundation is a private foundation, based in Lexington, MA. IRS filing data is available from 2021 through 2022. In 2022, it awarded 1 grant totaling $171.3M.
The Rare Disease Charitable Foundation at a glance
In short: The Rare Disease Charitable Foundation gave $171.3M across 1 grant in 2022 (avg $171.3M), mostly in Massachusetts. Source: 2022 IRS Form 990-PF.
- Annual giving (2022)
- $171,314,161
- +9.0% vs 2021
- Grants made (2022)
- 1
- +0.0% vs 2021
- Average grant
- $171,314,161
- +9.0% vs 2021
- Median grant
- $171,314,161
- Primary geography
- Massachusetts (100% of itemized 2022 grant dollars)
- Latest 990 filing
- Form 990-PF, 2022 View filing
Data from IRS Form 990-PF, 2022; updated September 2026.
Who The Rare Disease Charitable Foundation funds
How this funder distributes its grants
Top Recipients
Top recipient in 2022
The largest 2022 recipient was Approximately 449 Patients ($171.3M).
Grant Size Distribution
2 grants across all recorded years
The most common grant size was $5M or more: 2 grants of 2 (100%).
Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of the 2022 grant dollars on its one itemized grant.
States
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2021 to 2022, annual grant giving ranged from $157.2M (2021) to $171.3M (2022). In 2022 it made 1 grant totaling $171.3M.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Approximately 449 Patients Various, MA | Pharmaceutical products to people | $171,314,161 |
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Financial History
Multi-year comparison from IRS filings
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Qualifying Distributions |
|---|---|---|---|---|---|---|
| 2022 | — | $162,843,174 | $171,314,161 | $171,314,161 | 1 | $171,314,161 |
| 2021 | $20,024,953 | $157,988,721 | $157,205,783 | $157,205,783 | 1 | $157,205,783 |
Leadership & Key People
Officers and directors from IRS filings
The Rare Disease Charitable Foundation is led by Karen Shahinian, Chair on every filing since 2021; none of the 4 officers listed in 2022 report compensation.
Officers on the 2022 filing
Karen Shahinian
Chair
On filings since 2021
No compensation reported
Janeen Blake
Vice Chair
On filings since 2021
No compensation reported
Michael Riffitts
Member
On filings since 2021
No compensation reported
Ryan McCarthy
Secretary
On filings since 2021
No compensation reported
Data from IRS Form 990 filings, 2021–2022. "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 The Rare Disease Charitable Foundation
How much does The Rare Disease Charitable Foundation give each year?
The Rare Disease Charitable Foundation gave $171.3M across 1 grant in 2022, according to its 2022 IRS Form 990-PF. In 2021 it gave $157.2M across 1 grant.
Where does The Rare Disease Charitable Foundation operate?
The Rare Disease Charitable Foundation has awarded grants in Massachusetts.
What is The Rare Disease Charitable Foundation's EIN?
The Rare Disease Charitable Foundation's EIN (Employer Identification Number) is 45-3132103. IRS Form 990 filing data is available on this page for 2021–2022.
Data last updated September 2026. Sourced from IRS Form 990-PF filings.
Data update history
(3)
When this profile's IRS filing data changed on Grantable
- Updated Form 990-PF for fiscal year 2021 (received by the IRS December 12, 2024)
- Updated Form 990-PF for fiscal year 2022 (received by the IRS December 12, 2024)
- IRS filings on file for fiscal years 2021–2022
Live grants for the work The Rare Disease Charitable Foundation funds
Philanthropy, Voluntarism & Grantmaking Open opportunities, soonest deadline first.
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Browse active grant opportunities in The Rare Disease Charitable Foundation's focus areas in our free grants database
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Figures come from The Rare Disease Charitable 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.
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