Virginia · Nonprofit
LYSOSOMAL AND RARE DISORDERS RESEARCH AND TREATMENT CENTER INC
LYSOSOMAL AND RARE DISORDERS RESEARCH AND TREATMENT CENTER INC (Virginia) receives grants from 4 organizations whose IRS filings report $20,578 to it, the largest being THE LEANDRO P RIZZUTO FOUNDATION ($10,000). 0 of them have funded it in more than one year.
- Revenue FY2025
- $3.6M
- Funders on record
- 4
- Grants received
- $21k
- Net assets
- $957k
What Lysosomal and Rare Disorders Research and Treatment Center Inc does
Mission
The mission of the lysosomal and rare disorders research and treatment center (ldrtc) is to improve the diagnosis, treatment, and understanding of lysosomal and other rare genetic disorders by conducting scientific research, advancing translational medicine, educating healthcare professionals and patients, and promoting the development of innovative therapies.
As stated on its FY2025 Form 990.
Programs
On its FY2025 return the organization reported a significant change in how it conducts a program.
Effective october 2025, following amendments to the organization's bylaws, ldrtc ceased providing direct patient care and clinical treatment services. Direct patient care and treatment are conducted independently, while ldrtc continues its clinical research activities and operates as a nonprofit scientific and educational organization focused on industry-sponsored clinical research, investigator-initiated research, biomarker and therapeutic research, and scientific, professional, patient, and family education. This organizational change did not affect ldrtc's ongoing research and educational mission or its exempt purposes.
Its own explanation, from Schedule O of that return (Part III, line 3).
Industry-sponsored clinical research: ldrtc conducts industry-sponsored clinical research in lysosomal and other rare genetic disorders, including studies of investigational and approved therapies. Through these research programs, ldrtc participates in the scientific and clinical evaluation of therapeutic approaches, generates and contributes clinical research data, and supports the development and regulatory evaluation of therapies for rare diseases. These activities are conducted pursuant to clinical research agreements with pharmaceutical and biotechnology sponsors and in accordance with applicable research protocols and regulatory requirements.investigator-initiated research: ldrtc independently develops and conducts investigator-initiated research to advance the understanding of lysosomal and other rare genetic disorders. These activities include studies of disease mechanisms and natural history, biomarker discovery and validation, genotype-phenotype relationships, disease progression, clinical outcome measures, and innovative therapeutic approaches. Investigator-initiated research is supported through research grants and other charitable funding, and findings are…
$2,431,567 spent$2,793,672 earned by the program84% of program spendingScientific, professional, and patient education: ldrtc advances education in lysosomal and other rare genetic disorders through scientific symposia, conferences, professional and continuing medical education, fellowship and healthcare professional training, patient and caregiver education, workshops, webinars, and other collaborative educational initiatives. These programs are designed to disseminate scientific knowledge, improve disease recognition and diagnosis, advance clinical management, educate the rare-disease workforce, and provide patients and families with current information about rare disorders and emerging therapies.
$458,108 spent$55,000 earned by the program16% of program spending
The 2 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $2,889,675.
The organization over time
Each line starts at 100 in 2020, so what you read is the shape rather than the size: 150 means half as much again as 2020, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2020 to 2021, from $834k to $1.6M (+96%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
21% of LYSOSOMAL AND RARE DISORDERS RESEARCH AND TREATMENT CENTER INC’s revenue is contributions — about as donation-reliant as the typical peer (51% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 2 of the last 6 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Who funds it, year by year
2019 → 2023: the base held at 1 funder, grant income fell $10k → $85.
1 of 4 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 0% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of LYSOSOMAL AND RARE DISORDERS RESEARCH AND TREATMENT CENTER INC’s funders (the co-funder graph). Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
LYSOSOMAL AND RARE DISORDERS RESEARCH AND TREATMENT CENTER INC leans on a few funders — its largest provides 49% of grant income and the top three 100%; half comes from just 2 funders.
the vertical line marks half of all grant income — 2 funders to its left
Largest funder’s share by year: 2019 100% · 2023 100% — broadly stable.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Where its funders are
LYSOSOMAL AND RARE DISORDERS RESEARCH AND TREATMENT CENTER INC draws 100% of its grant income from funders outside Virginia, across 3 states in all.
Funder states come from each funder’s own filing. $85 arriving through sponsors registered in 1 state is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
LYSOSOMAL AND RARE DISORDERS RESEARCH AND TREATMENT CENTER INC runs a healthier operating margin than half of the 5,002 health nonprofits its size.
this organization peer median middle 50% of peers· 5,002 health nonprofits $1M–$10M, FY2025
Organizations like LYSOSOMAL AND RARE DISORDERS RESEARCH AND TREATMENT CENTER INC
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In Virginia
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
92% of spending goes to programs.
Governance
Public support
88%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 1 state
Screen this organization
A dated, signed PDF of the compliance screen for LYSOSOMAL AND RARE DISORDERS RESEARCH AND TREATMENT CENTER INC: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds LYSOSOMAL AND RARE DISORDERS RESEARCH AND TREATMENT CENTER INC?
- LYSOSOMAL AND RARE DISORDERS RESEARCH AND TREATMENT CENTER INC (Virginia) receives grants from 4 organizations whose IRS filings report $20,578 to it, the largest being THE LEANDRO P RIZZUTO FOUNDATION ($10,000). 0 of them have funded it in more than one year.
- How many funders does LYSOSOMAL AND RARE DISORDERS RESEARCH AND TREATMENT CENTER INC have?
- IRS filings report 4 organizations giving $20,578 in grants to LYSOSOMAL AND RARE DISORDERS RESEARCH AND TREATMENT CENTER INC.
- Who is the largest funder of LYSOSOMAL AND RARE DISORDERS RESEARCH AND TREATMENT CENTER INC?
- THE LEANDRO P RIZZUTO FOUNDATION is the largest funder on record, with $10,000 in grants. The full list of funders is on this page.
- How can an organization like LYSOSOMAL AND RARE DISORDERS RESEARCH AND TREATMENT CENTER INC find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Virginia. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
Play a game about who funds Lysosomal and Rare Disorders Research and Treatment Center →
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2020–2025), and the filings of 4 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 22, 2026. What this page cannot tell you · view filing