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EHLERS-DANLOS NATIONAL FOUNDATION Organization Name provided in the GuideStar Exchange* as of 07/01/2014: EHLERS-DANLOS NATIONAL FOUNDATION

Organization Name as listed in the IRS Business Master File as of 06/09/2014: EHLERS DANLOS NATIONAL FOUNDATION

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.

AKA  EDNF
McLean, VA
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GuideStar Summary

&1002;                GuideStar Exchange Committed to transparency ?
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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2012, 2011, and 2010 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Charting Impact Report is available
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Basic Organization Information

EHLERS-DANLOS NATIONAL FOUNDATION Organization Name provided in the GuideStar Exchange* as of 07/01/2014: EHLERS-DANLOS NATIONAL FOUNDATION

Organization Name as listed in the IRS Business Master File as of 06/09/2014: EHLERS DANLOS NATIONAL FOUNDATION

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
Also Known As: EDNF
Physical Address: McLean, VA 22102 
EIN: 38-2813140
Web URL: www.ednf.org 
NTEE Category: G Disease, Disorders, Medical Disciplines
G99 Diseases, Disorders, Medical Disciplines N.E.C.
G Disease, Disorders, Medical Disciplines
G20 Birth Defects
G Disease, Disorders, Medical Disciplines
G80 Specifically Named Diseases
Year Founded: 1985 
Ruling Year: 1988 


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Mission Statement

Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder, Ehlers-Danlos syndrome. We do this by creating and distributing accurate information; providing a network of support and communication; and fostering and funding research.

Legitimacy Information

This organization is registered with the IRS.

This organization is required to file an IRS Form 990 or 990-EZ.

Institutional funders should note that an organization’s inclusion on GuideStar.org does not satisfy IRS Rev. Proc. 2011-33 for identifying supporting organizations.

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Annual Revenue & Expenses (GuideStar Exchange,
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July 2014)

Fiscal Year Starting: January 1, 2011
Fiscal Year Ending: December 31, 2011

Total Revenue $289,498
Total Expenses $221,233

Revenue & Expenses (GuideStar Exchange,
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July 2014)

Fiscal Year Starting: January 1, 2011
Fiscal Year Ending: December 31, 2011

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Balance Sheet (IRS Form 990)

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Forms 990 Received from the IRS Additional Information
IRS Form 990 is an annual document used by approximately one-third of all public charities to report information about their finances and operations to the federal government. GuideStar uses data from Form 990 to populate its database with financial information about nonprofit organizations. Posting Form 990 images on the GuideStar website is an ongoing process.

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Forms 990 Provided by the Nonprofit

Financial Statements

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Annual Reports

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Leadership (GuideStar Exchange,
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July 2014)

Mr. Shane Robinson

Term:

Since Sept 2011

Board Chair (GuideStar Exchange,
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July 2014)

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Board of Directors (GuideStar Exchange,
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July 2014)

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Board Leadership Practices (GuideStar Exchange,
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July 2014)
?

Board Orientation & Education ?
Why does this matter? Without clarity around their responsibilities and expectations, board members are not positioned to succeed. They may find themselves challenged to fulfill their governance responsibilities or frustrated by the expectations that the organization has set for them. BoardSource recommends that every new board member participate in a formal orientation process, and that all board members sign a pledge or agreement committing to their board service and to all of the responsibilities and expectations that come with service. Ideally, board members also should participate in a formal governance training program prior to serving on a board.

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?
YES
CEO Oversight ?
Why does this matter? Oversight and management of the chief executive is one of the board’s most important legal responsibilities. The CEO or executive director is the board's single employee, and - just like any other employer/employee relationship - regular and written assessment is critical to ensuring that the chief executive and board are communicating openly about goals and performance. BoardSource recommends that boards conduct formal, written reviews of their chief executives on an annual basis, which should include an in-person discussion with the chief executive and distribution of the written evaluation to the full board.

Has the board conducted a formal, written assessment of the chief executive within the past year?
NO
Ethics & Transparency ?
Why does this matter? A commitment to handling conflicts of interests is essential to creating an organizational culture of transparency. Boards should create and follow a policy for identifying and handling conflicts of interest, whether real or perceived. BoardSource recommends that organizations review the conflict-of-interest statement and require signed disclosures from all board members and senior staff on an annual basis.

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements within the past year?
YES
Board Composition ?
Why does this matter? The best boards are composed of individuals who bring a variety of skills, perspectives, backgrounds, and resources to tackle the complex and strategic challenges confronting their organizations. BoardSource recommends that boards commit to diversity and inclusion by establishing written policies and practices, which include strategic and intentional recruitment of diverse board members, continual commitment to inclusivity, and equal access to board leadership opportunities.

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
YES
Board Performance ?
Why does this matter? Boards need to regularly assess their own performance. Doing so ensures that they are being intentional about how they govern their organization, which is a critical component of effective board leadership. BoardSource recommends that a board conduct a self-assessment of its performance a minimum of once every three years to ensure that it is staying on track with its roles and responsibilities.

Has the board conducted a formal, written self-assessment of its performance within the past three years?
NO

Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

Highest Paid Employee data is not available for this organization.

People information was last updated by the nonprofit in July 2014

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Programs

Program: EDNF HelpLine (GuideStar Exchange,
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July 2014)

Budget:
--
Category:
Patient & Family Support
Population Served:
None
None
None

Program Description:

The EDNF HelpLine provides information to those suffering with Ehlers-Danlos syndrome, builds awareness and increases knowledge.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: EDNF Center for Clinical Care and Research at GBMC (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
July 2014)

Budget:
$250,000
Category:
Health Diagnostic, Intervention & Treatment Services
Population Served:
None
None
None

Program Description:

EDNF has partnered with the Greater Baltimore Medical Center (GBMC) to establish the EDNF Center for Clinical Care & Research at GBMC’s Harvey Institute for Human Genetics. This premier EDS research and treatment facility will open in Baltimore in August 2014, and will provide comprehensive clinical care for patients, professional education for physicians, and cutting-edge research. It will be a place where new treatment options for patients can be explored and where physicians can learn about EDS.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: EDNF Physicians Directory (GuideStar Exchange,
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July 2014)

Budget:
--
Category:
Health Care Referrals
Population Served:
None
None
None

Program Description:

The Physicians Director is a database of providers that work with EDS patients. Medical professionals in our directory were initially recommended for inclusion by EDNF members, and provided written permission before being listed. EDNF does not endorse or recommend individual health care providers.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: EDNF Annual Learning Conference (GuideStar Exchange,
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July 2014)

Budget:
$120,000
Category:
Patient Education
Population Served:
None
None
None

Program Description:

The EDNF Annual Learning Conference is the largest gathering of people living with EDS in the world. The conference brings together top medical practitioners and researchers to educate patients and their families about EDS.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

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Reviews

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