Colorado · Nonprofit
DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA
DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA (Colorado) receives grants from 63 organizations whose IRS filings report $3,395,114 to it, the largest being FIDELITY INVESTMENTS CHARITABLE GIFT FUND ($868,020). 32 of them have funded it in more than one year, and 81% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $2.4M
- Funders on record
- 63
- Grants received
- $3.4M
- Net assets
- $1.3M
What Dystrophic Epidermolysis Bullosa Research Association of America does
Mission
Debra is dedicated to finding a cure for ebidermolysis bullosa " eb" which effects 1 out of every 50,000 live births in the united states today. Eb is a genetically based disease characterized by chronic, painfull blistering. The skin and mucous membranes are so fragile that the slightest touch can cause severe blistering inside and outside the body. Present at birth, eb effects men and women of all races and ethnic groups, and sometimes, when there is no family history. It occurs as the result of a spontaneous genetic mutation. Today, there is no cure or treatment for eb, except daily wound care and bandaging. Genetic research is making progress towards treatments and a cure.
As stated on its FY2025 Form 990.
Programs
Public and professional education - educate the public & health professionals about dystrophic epidermolysis bullosa "eb"
$299,853 spent14% of program spendingPatient & family services - provide services for the people with eb and their families through newsletters, counseling, peer support services, conferences and seminars
$1,628,269 spent77% of program spendingAdvocacy - network with other professional organizations and meet key legislators to inform them of eb and secure research funds
$44,977 spent2% of program spendingResearch
$149,929 spent7% of program spending
The 4 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $2,123,028.
The organization over time
Each line starts at 100 in 2019, so what you read is the shape rather than the size: 150 means half as much again as 2019, 50 means half. The number beside each label in the key is where it ended.
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 $3.0M to $2.2M (−26%).
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.
Government-grant reliance: 2021 15%. Grants only. Government contracts and fees sit inside program revenue.
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 2 of the last 7 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.
Chief executive
Brett Kopelan
Executive director
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 14 funders to 19 funders, grant income fell $430k → $413k.
15 of 63 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 81% 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 DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA’s funders (the co-funder graph). Top 30 of 63 funders by total. 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
DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA has a broad base — no single funder exceeds 26% of grant income, and it takes 3 funders to reach half.
the vertical line marks half of all grant income — 3 funders to its left
90% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA.
Largest funder’s share by year: 2017 58% · 2018 48% · 2019 47% · 2020 35% · 2021 35% · 2022 38% · 2023 28% — diversifying over time.
“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.
How long its funders stay
38% of DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA's funders are still giving 3 years after their first grant; 51% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
81% of DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $635k that is directly attributable, 100% of it comes from funders outside Colorado, across 20 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $2.8M arriving through sponsors registered in 13 states 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.
Organizations like DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA
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 Colorado
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
88% of spending goes to programs.
Governance
Public support
100%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 5 states
Screen this organization
A dated, signed PDF of the compliance screen for DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA: 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 DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA?
- DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA (Colorado) receives grants from 63 organizations whose IRS filings report $3,395,114 to it, the largest being FIDELITY INVESTMENTS CHARITABLE GIFT FUND ($868,020). 32 of them have funded it in more than one year, and 81% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA have?
- IRS filings report 63 organizations giving $3,395,114 in grants to DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA, 32 of which have funded it in more than one year.
- Who is the largest funder of DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA?
- FIDELITY INVESTMENTS CHARITABLE GIFT FUND is the largest funder on record, with $868,020 in grants. The full list of funders is on this page.
- How can an organization like DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Colorado. 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 Dystrophic Epidermolysis Bullosa Research Association of America →
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2019–2025), and the filings of 63 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 14, 2026. What this page cannot tell you · view filing