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Health : Medical Research (Grantmaking)

EB Research Partnership

EB Research Partnership is dedicated to finding a cure, and finding it quickly.

four stars

95.71

132 East 43rd Street Suite 432
New York, NY 10017
tel: (646) 844-0902   Web Site
EIN: 27-2417202

Board Leadership
Alexander Silver
Chairman

CEO
Michael Hund
Chief Executive Officer

  Score
(out of 100)
Rating
Overall Score & Rating 95.71 four stars
  Financial 95.44 four stars
  Accountability & Transparency 96.00 four stars
This rating was published 04/01/2021 and includes data from FY2019, the most recent 990 received at that time.

EB Research Partnership is the largest nonprofit funding research aimed at treating and ultimately curing Epidermolysis Bullosa, a group of devastating and life-threatening skin disorders that affect children from birth. EBRP works to treat and cure EB as quickly and efficiently as possible, fulfilling our mission through partnerships with non-profit and for-profit organizations, foundations, individual donors, and the EB and research communities. Leading researchers say treatments and a cure for EB are within reach. Though we have made significant progress, we need much greater resources in our pursuit of a cure.

EB Research Partnership is the largest nonprofit funding research aimed at treating and ultimately curing Epidermolysis Bullosa, a group of devastating and life-threatening skin disorders that affect children from birth. EBRP works to treat and cure EB as quickly and efficiently as possible, fulfilling our mission through partnerships with non-profit and for-profit organizations, foundations, individual donors, and the EB and research communities. Leading researchers say treatments and a cure for EB are within reach. Though we have made significant progress, we need much greater resources in our pursuit of a cure.

Financial

four stars

95.44

Accountability & Transparency

four stars

96.00

This rating was published 04/01/2021 and includes data from FY2019, 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)
81.3%
  Administrative Expenses 6.0%
  Fundraising Expenses 12.6%
  Fundraising Efficiency $0.07
  Working Capital Ratio (years) 4.61
  Program Expenses Growth 7.0%
  Liabilities to Assets 9.1%
All data for Financial Performance Metrics calculations was provided by EB Research Partnership on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by EB Research Partnership on recent 990s filed with the IRS.

Constituent Feedback

Charity Navigator believes nonprofit organizations that engage in inclusive practices, such as collecting feedback from the people/communities they serve, may be more effective. We've partnered with GuideStar by Candid to survey organizations about their feedback practices. Nonprofit organizations are encouraged to fill out the How We Listen section of their Candid profile.

Here's how this organization is listening and learning from the people they serve:
How is the organization collecting feedback?
Focus groups or interviews (by phone or in person), Suggestion box/email
How is the organization using feedback?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve
With whom is the organization sharing feedback?
Our staff, Our board, Our funders, Our community partners
What challenges does the organization face when collecting feedback?
Note: This organization did not select any of the multiple choice responses to this question
Describe a recent change in your organization that resulted from feedback.
To inform our supporters about life with EB, we share stories from individuals living with the disorder on our website and social media These stories were often from indiviudals whose families are involved in the organization, and the EB community expressed interest in hearing from additional patients and families EBRP created the #EBSuperheroes program, where any individual with EB or their caregiver can sign up to have their story shared, providing the community and donors with a wider view of life with EB
This Constituent Feedback information is provided to us by Candid. At this time, Constituent Feedback information published on this organization's page has no effect on its star rating per our methodology.

Highly Rated

Charity Name & State Overall Score Overall Rating
EB Research Partnership (NY) 95.71 four stars
American Skin Association (NY) 85.57 three stars
T.J. Martell Foundation (NY) 85.61 three stars
Moffitt Cancer Center Foundation (FL) 92.95 four stars
The Hope Foundation (MI) 93.22 four stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $6,032,678
   Federated Campaigns $0
   Membership Dues $0
   Fundraising Events $1,884,891
   Related Organizations $0
   Government Grants $0
Total Contributions $7,917,569
   Program Service Revenue $0
Total Primary Revenue $7,917,569
   Other Revenue $189,913
TOTAL REVENUE $8,107,482
   
EXPENSES  
   Program Expenses $3,052,209
   Administrative Expenses $205,942
   Fundraising Expenses $553,829
TOTAL FUNCTIONAL EXPENSES $3,811,980
   
Payments to Affiliates $0
Excess (or Deficit) for the year $4,295,502
   
Net Assets $14,632,243

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
Research Grants $3,052,209 100.0%

Ratings History
EB Research Partnership has received 3 consecutive 4-star ratings from Charity Navigator.

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2019-12 04/01/2021 95.71 four stars
2018-12 06/01/2020 96.49 four stars
2017-12 02/01/2020 96.55 four 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 27-2417202
Name in IRS Master File EB RESEARCH PARTNERSHIP INC
NTEE Code G80
NTEE Classification Specifically Named Diseases
NTEE Type Diseases, Disorders, Medical Disciplines
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities
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 March, 2011
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, 2017
  • December, 2016
  • December, 2015
  • December, 2014
  • December, 2013
Compensation % of Expenses Paid to Title
$240,000 6.29% Michael Hund CEO

Highly Rated

Charity Name & State Overall Score Overall Rating
EB Research Partnership (NY) 95.71 four stars
Michael J. Fox Foundation for Parkinson's Research (NY) 91.16 four stars
Steadman Philippon Research Institute (CO) 93.05 four stars
FRAXA Research Foundation (MA) 92.38 four stars
NephCure Kidney International (PA) 89.79 three stars

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This charity has an official representative registered with Charity Navigator.

Constituent Feedback

This organization is sharing information on how they communicate with stakeholders to better inform your giving.

Charity Contact Info

EB Research Partnership
132 East 43rd Street
Suite 432
New York, NY 10017
tel: (646) 844-0902
EIN: 27-2417202

Visit Web Site

Board Leadership

Alexander Silver
Chairman

CEO

Michael Hund
Chief Executive Officer

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