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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

91.16

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 91.16
  Financial 88.17
  Accountability & Transparency 96.00
This rating was published 10/01/2016 and includes data from FY2015, the most recent 990 received at that time.

Learn more about how we calculate the overall score and rating.

Financial

88.17

Accountability & Transparency

96.00

This rating was published 10/01/2016 and includes data from FY2015, 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)
83.7%
  Administrative Expenses 4.4%
  Fundraising Expenses 11.8%
  Fundraising Efficiency $0.17
  Working Capital Ratio (years) 2.27
  Program Expenses Growth 1.6%
  Liabilities to Assets 1.3%
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) 91.16
Prader-Willi Syndrome Association (USA) (FL) 86.40
United Cerebral Palsy of Greater Birmingham (AL) 97.73
The Progeria Research Foundation (MA) 99.93
Alpha-1 Foundation (FL) 94.30

Compare These Charities (Highly Rated)

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.

REVENUE  
Contributions  
   Contributions, Gifts & Grants $649,364
   Federated Campaigns $0
   Membership Dues $0
   Fundraising Events $0
   Related Organizations $0
   Government Grants $0
Total Contributions $649,364
   Program Service Revenue $0
Total Primary Revenue $649,364
   Other Revenue $929,434
TOTAL REVENUE $1,578,798
   
EXPENSES  
   Program Expenses $1,001,096
   Administrative Expenses $56,159
   Fundraising Expenses $179,324
TOTAL FUNCTIONAL EXPENSES $1,236,579
   
Payments to Affiliates $0
Excess (or Deficit) for the year $342,219
   
Net Assets $2,683,268

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 $630,435 63.0%
Public and Professional Education $224,642 22.4%
Advocacy $33,697 3.4%

Ratings History
Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) has received 2 consecutive 4-star ratings from Charity Navigator.

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

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, 2015
  • December, 2014
  • December, 2013
  • December, 2012
  • December, 2011

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).

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Compensation % of Expenses Paid to Title
$139,000 11.24% Brett Kopelan Executive Director

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.

Highly Rated

Charity Name & State Overall Score Overall Rating
Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) (NY) 91.16
The Progeria Research Foundation (MA) 99.93
The Cornelia de Lange Syndrome Foundation (CT) 98.69
National Down Syndrome Society (NY) 90.98
Alpha-1 Foundation (FL) 94.30

Compare These Charities (Highly Rated)

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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