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Health : Diseases, Disorders, and Disciplines

Aplastic Anemia & MDS International Foundation

Answers. Support. Hope.

three stars

84.09

4330 East West Highway Suite 230
Bethesda, MD 20814
tel: (800) 747-2820   Web Site
EIN: 52-1336903

Board Leadership
Kevin Lyons-Tarr
Chairman

CEO
Neil Horikoshi
Chief Executive Officer

 
 

This organization has shared information about their results and/or practices to help inform your giving. Click to view this data.

  Score
(out of 100) 		Rating
Overall Score & Rating 84.09 three stars
  Financial 77.50 two stars
  Accountability & Transparency 100.00 four stars
This rating was published 03/01/2020 and includes data from FY2018, the most recent 990 received at that time.
Why isn't this based on more recent data?

The Aplastic Anemia and MDS Foundation International is the world's leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH) and related bone marrow failure diseases. The Foundation provides answers, support, and hope to thousands of patients and their families around the world through the three phases of bone marrow failure diseases: the life-changing phase of diagnosis; the life-threatening phase of treatment; and the life-long phase of living with a chronic disease.

The Aplastic Anemia and MDS Foundation International is the world's leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH) and related bone marrow failure diseases. The Foundation provides answers, support, and hope to thousands of patients and their families around the world through the three phases of bone marrow failure diseases: the life-changing phase of diagnosis; the life-threatening phase of treatment; and the life-long phase of living with a chronic disease.

Impact Information

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GuideStar is Charity Navigator's trusted partner in sharing information on how this organization seeks impact.  GuideStar has recognized this organization with a Platinum Seal of Transparency for voluntarily and publicly sharing information about how they measure their progress and results.  Learn More about Impact Information.
Reported Results
Showing 3 of 6
Total in 2019
Total number of classes offered
34
Total Patients Served by Patient Educator
4,910
Number of website pageviews
1,145,370
Number of unique website visitors
997,179
Number of conference attendees
413
Number of conferences held
4
This organization has earned a GuideStar's Platinum Seal of Transparency by voluntarily sharing the measures of progress and results they use to pursue their mission. Organizations earn Platinum Seals by selecting from a catalog of over 900 expert recognized metrics or by creating a new metric that best fits their work. This information is reported by the organization and displayed publicly on their GuideStar Nonprofit Profile. With over 1.6 million Nonprofit Profiles, 9 million annual visitors and over 200 data partners, GuideStar is the world's leading source of information about nonprofit organizations. A nonprofit itself, GuideStar is dedicated to providing better data for better decisions for a better world.
This impact information is current as of March 2020, when it was provided to us by GuideStar. At this time, Impact information published on this organization's page has no effect on its rating per our methodology.

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

Financial

two stars

77.50

Accountability & Transparency

four stars

100.00

This rating was published 03/01/2020 and includes data from FY2018, the most recent 990 received at that time.
Why isn't this based on more recent data?
Overall Rating Chart
  Program Expenses
(Percent of the charity's total expenses spent on the programs
and services it delivers)		 88.1%
  Administrative Expenses 3.6%
  Fundraising Expenses 8.1%
  Fundraising Efficiency $0.09
  Working Capital Ratio (years) 0.32
  Program Expenses Growth -3.5%
  Liabilities to Assets 42.4%
All data for Financial Performance Metrics calculations was provided by Aplastic Anemia & MDS International Foundation on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by Aplastic Anemia & MDS International Foundation on recent 990s filed with the IRS.
Information Provided on the Form 990  
  Independent Voting Board Members
  No Material diversion of assets
  Audited financials prepared by independent accountant
  Does Not Provide Loan(s) to or Receive Loan(s) From related parties
  Documents Board Meeting Minutes
  Provided copy of Form 990 to organization's governing body in advance of filing
  Conflict of Interest Policy
  Whistleblower Policy
  Records Retention and Destruction Policy
  CEO listed with salary
  Process for determining CEO compensation
  Board Listed / Board Members Not Compensated
Is the following information easily accessible on the charity's website?  
  Donor Privacy Policy
  Board Members Listed
  Audited Financials
  Form 990
  Key staff listed

Constituent Voice

Charity Navigator believes collecting feedback from the people an organization serves can make it more effective. That is why we're partnering with GuideStar by Candid to share Constituent Voice information with you. Here's how this organization is listening and learning from its constituents:
How is the organization collecting feedback?
Electronic surveys (by email, tablet, etc), Focus groups or interviews (by phone or in person), Constituent (client or resident, etc) advisory committees
How is the organization using feedback?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve
With whom is the organization sharing feedback?
The people we serve, Our staff, Our board, Our community partners
What challenges does the organization face when collecting feedback?
It is difficult to get the people we serve to respond to requests for feedback, It is difficult to find the ongoing funding to support feedback collection
Describe a recent change in your organization that resulted from feedback.
We solicited feedback from a number of constituent stakeholder groups about our patient-focused programs and services and used the recommendations to adjust our educational offerings for the current and future program years
This Constituent Voice information is provided to us by Candid. At this time, Constituent Voice information published on this organization's page has no effect on its rating per our methodology.

Highly Rated

Charity Name & State Overall Score Overall Rating
Aplastic Anemia & MDS International Foundation (MD) 84.09 three stars
Restless Legs Syndrome Foundation (TX) 89.88 three stars
Epilepsy Foundation of Minnesota (MN) 89.56 three stars
The Boomer Esiason Foundation (NY) 93.39 four stars
FSH Society (MA) 93.11 four stars

Compare These Charities (Highly Rated)

REVENUE  
Contributions  
   Contributions, Gifts & Grants $2,550,034
   Federated Campaigns $19,971
   Membership Dues $0
   Fundraising Events $344,713
   Related Organizations $0
   Government Grants $0
Total Contributions $2,914,718
   Program Service Revenue $49,787
Total Primary Revenue $2,964,505
   Other Revenue $91,977
TOTAL REVENUE $3,056,482
   
EXPENSES  
   Program Expenses $3,885,332
   Administrative Expenses $200,701
   Fundraising Expenses $522,248
TOTAL FUNCTIONAL EXPENSES $4,608,281
   
Payments to Affiliates $0
Excess (or Deficit) for the year $-1,551,799
   
Net Assets $1,907,720

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.

Due to an error on this organization's Form 990, we are unable to display program information.

Ratings History

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2018-12 03/01/2020 84.09 three stars
2017-12 06/01/2019 92.00 four stars
2017-12 04/01/2019 91.51 four stars
2016-12 06/01/2018 91.45 four stars
2015-12 07/01/2017 93.32 four stars
2014-12 06/01/2016 96.66 four stars
 
CN 2.0
2014-12 10/01/2015 96.13 four stars
2013-12 12/22/2014 99.08 four stars
2012-12 11/01/2013 97.33 four stars
2011-12 09/01/2012 93.54 four stars
2010-12 12/23/2011 98.75 four stars
2009-12 09/20/2011 96.87 four stars
 
CN 1.0
2009-12 04/01/2011 98.10 four stars
2008-12 05/01/2010 97.35 four stars
2007-12 03/01/2009 98.47 four stars
2006-12 03/01/2008 99.04 four stars
2005-12 02/01/2007 98.90 four stars
2004-12 07/01/2006 98.76 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 52-1336903
Name in IRS Master File APLASTIC ANEMIA & MDS INTERNATIONAL FOUNDATION 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 (161) Scientific research (diseases)
(602) Gifts, grants, or loans to other organizations
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 May, 1984
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
$19,082 0.41% Neil Horikoshi CEO
Other Salaries of Note
$241,887 5.24% Kathleen Weis Former CEO

Highly Rated

Charity Name & State Overall Score Overall Rating
Aplastic Anemia & MDS International Foundation (MD) 84.09 three stars
Cure SMA (IL) 90.45 four stars
Parent Project Muscular Dystrophy (NJ) 90.04 four stars
Hunter's Hope Foundation (NY) 90.45 four stars
Friedreich's Ataxia Research Alliance (PA) 97.38 four stars

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This charity has an official representative registered with Charity Navigator.

Constituent Voice

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

Charity Contact Info

Aplastic Anemia & MDS International Foundation
4330 East West Highway
Suite 230
Bethesda, MD 20814
tel: (800) 747-2820
fax: (301) 279-7205
EIN: 52-1336903

Visit Web Site

Board Leadership

Kevin Lyons-Tarr
Chairman

CEO

Neil Horikoshi
Chief Executive Officer

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