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Health : Diseases, Disorders, and Disciplines

Osteogenesis Imperfecta Foundation

Helping people cope with problems associated with osteogenesis imperfecta

three stars

87.25

656 Quince Orchard Road Suite 650
Gaithersburg, MD 20878
tel: (844) 889-7579   Web Site
EIN: 23-7076021

Board Leadership
Cameron Penn
President

CEO
Tracy Smith Hart
Chief Executive Officer

  Score
(out of 100)
Rating
Overall Score & Rating 87.25 three stars
  Financial 82.43 three stars
  Accountability & Transparency 96.00 four stars
This rating was published 02/01/2021 and includes data from FY2019, the most recent 990 received at that time.

The Osteogenesis Imperfecta Foundation (OI Foundation) is the only voluntary national health organization dedicated to helping people cope with the problems associated with osteogenesis imperfecta (OI). A genetic disorder known as brittle bone disease, OI is characterized by bones that break easily. Founded in 1970, the OI Foundation's mission is to improve the quality of life for people affected by OI through research, education, awareness, and mutual support. Since its inception, the OI Foundation has doubled funding for research every five years, for a total investment of almost $3 million. A biennial national conference provides more than 570 people with medical, research, and coping information.

The Osteogenesis Imperfecta Foundation (OI Foundation) is the only voluntary national health organization dedicated to helping people cope with the problems associated with osteogenesis imperfecta (OI). A genetic disorder known as brittle bone disease, OI is characterized by bones that break easily. Founded in 1970, the OI Foundation's mission is to improve the quality of life for people affected by OI through research, education, awareness, and mutual support. Since its inception, the OI Foundation has doubled funding for research every five years, for a total investment of almost $3 million. A biennial national conference provides more than 570 people with medical, research, and coping information.

Financial

three stars

82.43

Accountability & Transparency

four stars

96.00

This rating was published 02/01/2021 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)
75.5%
  Administrative Expenses 10.5%
  Fundraising Expenses 13.8%
  Fundraising Efficiency $0.16
  Working Capital Ratio (years) 0.78
  Program Expenses Growth 4.2%
  Liabilities to Assets 15.3%
All data for Financial Performance Metrics calculations was provided by Osteogenesis Imperfecta Foundation on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by Osteogenesis Imperfecta Foundation on recent 990s filed with the IRS.

Highly Rated

Charity Name & State Overall Score Overall Rating
Osteogenesis Imperfecta Foundation (MD) 87.25 three stars
Restless Legs Syndrome Foundation (TX) 85.22 three stars
Friedreich's Ataxia Research Alliance (PA) 98.23 four stars
Epilepsy Foundation of Minnesota (MN) 92.20 four stars
Hunter's Hope Foundation (NY) 93.62 four stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $1,046,318
   Federated Campaigns $4,664
   Membership Dues $27,559
   Fundraising Events $493,093
   Related Organizations $0
   Government Grants $87,597
Total Contributions $1,659,231
   Program Service Revenue $0
Total Primary Revenue $1,659,231
   Other Revenue $176,110
TOTAL REVENUE $1,835,341
   
EXPENSES  
   Program Expenses $1,471,938
   Administrative Expenses $418,605
   Fundraising Expenses $219,207
TOTAL FUNCTIONAL EXPENSES $2,109,750
   
Payments to Affiliates $0
Excess (or Deficit) for the year $-274,409
   
Net Assets $1,496,703

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 $551,148 37.4%
Providing Information $455,477 30.9%
Public Awareness $70,896 4.8%

Ratings History

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2019-06 02/01/2021 87.25 three stars
2018-06 10/01/2020 88.11 three stars
2018-06 11/01/2019 86.07 three stars
2017-06 09/01/2018 93.31 four stars
2016-06 04/01/2018 89.40 three stars
2016-06 08/01/2017 88.32 three stars
2016-06 06/01/2017 85.27 three stars
2015-06 06/01/2016 91.36 four stars
 
CN 2.0
2014-06 10/01/2015 76.25 two stars
2013-06 06/01/2014 74.05 two stars
2012-06 07/01/2013 73.64 two stars
2011-06 09/01/2012 74.78 two stars
2011-06 04/01/2012 86.64 three stars
2010-06 09/20/2011 94.37 four stars
 
CN 1.0
2009-06 08/01/2010 92.89 four stars
2008-06 07/01/2009 68.30 one star
2007-06 05/01/2008 73.38 two stars
2006-06 02/01/2007 73.39 two stars
2005-06 03/01/2006 85.57 three stars
2004-06 05/01/2005 90.33 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 23-7076021
Name in IRS Master File OSTEOGENESIS IMPERFECTA FOUNDATION INC
NTEE Code H50
NTEE Classification Nerve, Muscle, Bone Research
NTEE Type Medical Research
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities (59) Other school related activities
(927) Fundraising
(602) Gifts, grants, or loans to other organizations
Foundation Status Organization that normally receives no more than one-third of its support from gross investment income and unrelated business income and at the same time more than one-third of its support from contributions, fees, and gross receipts related to exempt purposes.  509(a)(2)
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 November, 1970
Filing Requirement 990 (all other) or 990EZ return
Fiscal Year End June
IRS Forms 990
(provided courtesy of Foundation Center)
(Log In or Register Now to View Forms 990!)
  • June, 2017
  • June, 2016
  • June, 2015
  • June, 2014
  • June, 2013
Compensation % of Expenses Paid to Title
$183,382 8.69% Tracy Smith Hart Chief Executive Officer

Highly Rated

Charity Name & State Overall Score Overall Rating
Osteogenesis Imperfecta Foundation (MD) 87.25 three stars
Charcot-Marie-Tooth Association (PA) 99.51 four stars
FSHD Society (MA) 91.14 four stars
Friedreich's Ataxia Research Alliance (PA) 98.23 four stars
Hunter's Hope Foundation (NY) 93.62 four stars

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Charity Contact Info

Osteogenesis Imperfecta Foundation
656 Quince Orchard Road
Suite 650
Gaithersburg, MD 20878
tel: (844) 889-7579
fax: (301) 947-0456
EIN: 23-7076021

Mail donations to:
P.O. Box 824061
Philadelphia, PA 19182

Visit Web Site

Board Leadership

Cameron Penn
President

CEO

Tracy Smith Hart
Chief Executive Officer

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