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Dystrophic Epidermolysis Bullosa Research Assn of America Inc

EIN 11-2519726 · Boulder, CO

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthGood72 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

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.

Income
$2.4 million
Spending
$2.4 million
Spent on programs
88%
Reserves
3.9 months of spending
Largest source of income
donations and private grants, 80%
Employees
8
Volunteers
10
Highest pay
$326,135, executive director

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Good: 72 out of 100.

  • Reserves

    20 of 35

    Spendable reserves would cover 3.9 months of spending.

  • Debt

    20 of 20

    It owes 6% of what it owns.

  • Living within its means

    12 of 15

    Income exceeded spending by 0% of income.

  • Income trend

    5 of 15

    Income fell 23% on the year before.

  • Spending floor

    15 of 15

    88% of spending went to programs and raising each dollar of donations cost 11 cents.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 100 out of 100.

  • Independent board

    25 of 25

    10 of 10 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (4)
  1. $299,853 spent. PUBLIC AND PROFESSIONAL EDUCATION - EDUCATE THE PUBLIC & HEALTH PROFESSIONALS ABOUT DYSTROPHIC EPIDERMOLYSIS BULLOSA "EB"
  2. $1.6 million spent. PATIENT & FAMILY SERVICES - PROVIDE SERVICES FOR THE PEOPLE WITH EB AND THEIR FAMILIES THROUGH NEWSLETTERS, COUNSELING, PEER SUPPORT SERVICES, CONFERENCES AND SEMINARS
  3. $44,977 spent. ADVOCACY - NETWORK WITH OTHER PROFESSIONAL ORGANIZATIONS AND MEET KEY LEGISLATORS TO INFORM THEM OF EB AND SECURE RESEARCH FUNDS
  4. $149,929 spent. RESEARCH

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated November 6, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2025.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since July 1982.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated November 4, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.