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Health : Diseases, Disorders, and Disciplines

Dystrophic Epidermolysis Bullosa Research Association of America (debra of America)

Because the cost of doing nothing is too great

four stars

95.31

75 Broad Street Suite 300
New York, NY 10004
tel: (212) 868-1573   Web Site
EIN: 11-2519726

Board Leadership
Richard Gallagher
Chair

CEO
Brett Kopelan
Executive Director

 
 
  Score
(out of 100)
Rating
Overall Score & Rating 95.31 four stars
  Financial 94.71 four stars
  Accountability & Transparency 96.00 four stars
This rating was published 09/01/2017 and includes data from FY2016, the most recent 990 received at that time.

The Dystrophic Epidermolysis Bullosa Research Association of America (debra of America), is the only national non-profit that provides all inclusive care to those with Epidermolysis Bullosa (EB). Our mission is to fund research and provide free services and programs for those with EB - The Worst Disease You've Never Heard Of.

EB is a rare, connective tissue disorder with many genetic and symptomatic variations that affects 1 out of every 20,000 live births in the United States. All of its forms share the prevalent symptom of extremely fragile skin that blisters and tears with any friction or trauma. The list of secondary complications and illnesses can be long as every internal organ and bodily system can be affected by the disorder.

The Dystrophic Epidermolysis Bullosa Research Association of America (debra of America), is the only national non-profit that provides all inclusive care to those with Epidermolysis Bullosa (EB). Our mission is to fund research and provide free services and programs for those with EB - The Worst Disease You've Never Heard Of.

EB is a rare, connective tissue disorder with many genetic and symptomatic variations that affects 1 out of every 20,000 live births in the United States. All of its forms share the prevalent symptom of extremely fragile skin that blisters and tears with any friction or trauma. The list of secondary complications and illnesses can be long as every internal organ and bodily system can be affected by the disorder.

Financial

four stars

94.71

Accountability & Transparency

four stars

96.00

This rating was published 09/01/2017 and includes data from FY2016, the most recent 990 received at that time.
Overall Rating Chart
  Program Expenses
(Percent of the charity's total expenses spent on the programs
and services it delivers)
84.0%
  Administrative Expenses 4.6%
  Fundraising Expenses 11.2%
  Fundraising Efficiency $0.19
  Working Capital Ratio (years) 2.00
  Program Expenses Growth 18.1%
  Liabilities to Assets 2.0%
All data for Financial Performance Metrics calculations was provided by Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) on recent 990s filed with the IRS.

Highly Rated

Charity Name & State Overall Score Overall Rating
Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) (NY) 95.31 four stars
Prader-Willi Syndrome Association (USA) (FL) 85.60 three stars
National Down Syndrome Society (NY) 87.13 three stars
The Cornelia de Lange Syndrome Foundation (CT) 100.00 four stars
National Fragile X Foundation (DC) 93.33 four stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $749,944
   Federated Campaigns $0
   Membership Dues $0
   Fundraising Events $0
   Related Organizations $0
   Government Grants $0
Total Contributions $749,944
   Program Service Revenue $0
Total Primary Revenue $749,944
   Other Revenue $857,985
TOTAL REVENUE $1,607,929
   
EXPENSES  
   Program Expenses $1,368,684
   Administrative Expenses $77,735
   Fundraising Expenses $169,908
TOTAL FUNCTIONAL EXPENSES $1,616,327
   
Payments to Affiliates $0
Excess (or Deficit) for the year $-8,398
   
Net Assets $2,775,860

Program names and associated costs are listed for the top programs as reported on the charity's most recently filed Form 990. The top programs displayed will include the largest three programs, or those programs covering at least 60% of the charity's total expenses, whichever comes first.

Program Name Amount Spent % of Program Expenses
Patient & Family Services $855,627 62.5%
Public and Professional Education $310,943 22.7%
Advocacy $46,640 3.4%

Ratings History
Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) has received 3 consecutive 4-star ratings from Charity Navigator.

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2016-12 09/01/2017 95.31 four stars
2015-12 10/01/2016 91.16 four stars
2014-12 06/01/2016 92.02 four stars
 
CN 2.0
2014-12 11/01/2015 91.75 four stars
2014-12 10/01/2015 89.04 three stars
2013-12 03/01/2015 78.27 two stars

The data displayed on this tab is provided by the IRS in the form of Publication 78 and the Business Master File (BMF).

EIN 11-2519726
Name in IRS Master File DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSN OF AMERICA INC
NTEE Code [Not Provided by IRS]
NTEE Classification [Not Provided by IRS]
NTEE Type [Not Provided by IRS]
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities (160) Aid to the handicapped (see also 031)
(602) Gifts, grants, or loans to other organizations
(927) Fundraising
Foundation Status Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi)
Deductibility Contributions are deductible
Affiliation Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations).
Group Name [Not Applicable]
Ruling Date July, 1982
Filing Requirement 990 (all other) or 990EZ return
Fiscal Year End December
IRS Forms 990
(provided courtesy of Foundation Center)
(Log In or Register Now to View Forms 990!)
  • December, 2016
  • December, 2015
  • December, 2014
  • December, 2013
  • December, 2012

The data displayed in this profile is provided by the IRS for free in the form of Publication 78 and the Business Master File (BMF).

Compensation % of Expenses Paid to Title
$153,012 9.46% Brett Kopelan Executive Director

Highly Rated

Charity Name & State Overall Score Overall Rating
Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) (NY) 95.31 four stars
Fanconi Anemia Research Fund (OR) 94.74 four stars
Alpha-1 Foundation (FL) 94.31 four stars
United Ability (AL) 96.14 four stars
Cerebral Palsy Foundation (NY) 91.52 four stars

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This charity has an official representative registered with Charity Navigator.

Charity Contact Info

Dystrophic Epidermolysis Bullosa Research Association of America (debra of America)
75 Broad Street
Suite 300
New York, NY 10004
tel: (212) 868-1573
fax: (212) 868-9296
EIN: 11-2519726

Visit Web Site

Board Leadership

Richard Gallagher
Chair

CEO

Brett Kopelan
Executive Director

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