EIN 11-2519726

Dystrophic Epidermolysis Bullosa Research Association of America

IRS 501(c) type
501(c)(3)
Num. employees
9
Year formed
1979
Most recent tax filings
2022-12-01
Description
Dystrophic Epidermolysis Bullosa Research Association of America is dedicated to finding a cure for Epidermolysis Bullosa (EB), a genetically based disease characterized by chronic, painful blistering that affects 1 out of every 50,000 live births in the United States. They provide patient and family services including newsletters, counseling, peer support services, conferences and seminars. Additionally, they advocate for EB research by networking with other professional organizations and meeting key legislators to secure research funds. Debra is located in New York, NY.
Also known as...
D E B R A of America
Total revenues
$3,356,992
2022
Total expenses
$1,969,058
2022
Total assets
$2,090,353
2022
Num. employees
9
2022

Program areas at Dystrophic Epidermolysis Bullosa Research Association of America

Public and professional education - educate the public & health professionals about Dystrophic Epidermolysis Bullosa "eb"
Advocacy - network with other professional organizations and meet key legislators to inform them of eb and secure Research funds
Patient & family services - provide services for the people with eb and their families through newsletters, counseling, peer support services, conferences and seminars
Research

Who funds Dystrophic Epidermolysis Bullosa Research Association of America

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Vanguard Charitable Endowment ProgramFor Recipient's Exempt Purpose$200,500
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$109,950
Morgan Stanley Global Impact Funding TrustUnrestricted General Support$100,000
...and 15 more grants received

Personnel at Dystrophic Epidermolysis Bullosa Research Association of America

NameTitleCompensation
Brett KopelanExecutive Director$260,635
Andrew TavaniChair$0
John LeeSecretary$0
J Alec AlexanderTreasurer$0
Robert RaylVice Chair, Atlanta, Ga$0

Financials for Dystrophic Epidermolysis Bullosa Research Association of America

RevenuesFYE 12/2022
Total grants, contributions, etc.$2,399,604
Program services$0
Investment income and dividends$722
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$0
Net income from fundraising events$945,540
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$11,126
Total revenues$3,356,992

Form 990s for Dystrophic Epidermolysis Bullosa Research Association of America

Fiscal year endingDate received by IRSFormPDF link
2022-122023-06-09990View PDF
2021-122022-03-11990View PDF
2020-122021-05-21990View PDF
2019-122020-09-22990View PDF
2018-122019-07-23990View PDF
...and 8 more Form 990s
Data update history
November 25, 2023
Posted financials
Added Form 990 for fiscal year 2021
October 25, 2023
Received grants
Identified 7 new grant, including a grant for $47,471 from American Online Giving Foundation
August 3, 2023
Posted financials
Added Form 990 for fiscal year 2022
May 6, 2023
Received grants
Identified 1 new grant, including a grant for $7,600 from Gwinnett Championship Foundation
August 2, 2022
Received grants
Identified 2 new grant, including a grant for $6,803 from PayPal Giving Fund
Nonprofit Types
Disease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Political advocacyFundraising eventsPeer-to-peer fundraisingNational levelFundraising races, competitions, and tournamentsTax deductible donations
General information
Address
75 Broad St Suite 300
New York, NY 10004
Metro area
New York-Newark-Jersey City, NY-NJ-PA
County
New York County, NY
Website URL
debra.org/ 
Phone
(212) 868-1573
IRS details
EIN
11-2519726
Fiscal year end
December
Taxreturn type
Form 990
Year formed
1979
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
G40: Diseases of Specific Organs
Parent/child status
Independent
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