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Wilmington NC | IRS ruling year: 2013 | EIN: 46-3208388
Organization Mission
THE KOOLEN-DE VRIES SYNDROME FOUNDATION IS AN INTERNATIONAL GROUP THAT (CONTINUED ON SCHEDULE O) SUPPORTS, INFORMS, AND NETWORKS WITH ANYONE AFFECTED BY KOOLEN-DE VR ... (More)
THE KOOLEN-DE VRIES SYNDROME FOUNDATION IS AN INTERNATIONAL GROUP THAT (CONTINUED ON SCHEDULE O) SUPPORTS, INFORMS, AND NETWORKS WITH ANYONE AFFECTED BY KOOLEN-DE VRIES SYNDROME (KDVS) AND WITH ANY INTERESTED PROFESSIONALS. THE FOUNDATION'S ACTIVITIES INC (Less)
Ratings are calculated from one or more beacon scores. Currently, we require either an Accountability & Finance beacon or an Impact & Results beacon to be eligible for a Charity Navigator rating. Note: The absence of a rating does not indicate a positive or negative assessment; it only indicates that we have not yet evaluated this organization.
See rating report below to learn why this organization is not currently eligible.
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Use the tool below to select different beacons to see how the weighting shifts when only one, two, or three beacons are earned.
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Not Currently Scored
Koolen-De Vries Syndrome Foundation cannot currently be evaluated by our Accountability & Finance methodology due to only having 2 years of electronically-filed IRS Form 990 data.
To ensure year-to-year consistency the Encompass Rating System's Finance & Accountability beacon analyzes the three-year average of some data provided through the IRS 990.
Charity Navigator currently only has 2 years of consecutive e-filed Forms 990 from the IRS for Koolen-De Vries Syndrome Foundation under the EIN: 46-3208388.
Before Charity Navigator can evaluate Koolen-De Vries Syndrome Foundation, Koolen-De Vries Syndrome Foundation will need to e-file for additional fiscal years.
This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.
No Data Available
Salary data is coming soon.
Below are some key data points from the Exempt Organization IRS Business Master File (BMF) for this organization. Learn more about the BMF on the IRS website
Foundation Status:
Organization which receives a substantial part of its support from a governmental unit or the general public 170(b)(1)(A)(vi) (BMF foundation code: 15)
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). (BMF affiliation code: 3)
The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage finance and accountability data from it to form Encompass ratings. Click here to search for this organization's Forms 990 on the IRS website (if any are available). Simply enter the organization's name (Koolen-De Vries Syndrome Foundation) or EIN (463208388) in the 'Search Term' field.
Not Currently Scored
Koolen-De Vries Syndrome Foundation cannot currently be evaluated by our Impact & Results methodology because either (A) it is eligible, but we have not yet received data; (B) we have not yet developed an algorithm to estimate its programmatic impact; (C) its programs are not direct services; or (D) it is not heavily reliant on contributions from individual donors.
Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.
Not Currently Scored
Koolen-De Vries Syndrome Foundation cannot currently be evaluated by our Culture & Community methodology because we have not received data from the charity regarding its Constituent Feedback or Equity Practices strategies.
Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.
Score
This beacon provides an assessment of the organization's leadership capacity, strategic thinking and planning, and ability to innovate or respond to changes in constituent demand/need or other relevant social and economic conditions to achieve the organization's mission.
Learn more
Full Credit
Partial Credit
No CreditMission 10/10 points Mission 10/10 points
The nonprofit organization presents evidence of strategic thinking through articulating the organization's mission
THE KOOLEN-DE VRIES SYNDROME FOUNDATION IS AN INTERNATIONAL GROUP THAT (CONTINUED ON SCHEDULE O) SUPPORTS, INFORMS, AND NETWORKS WITH ANYONE AFFECTED BY KOOLEN-DE VRIES SYNDROME (KDVS) AND WITH ANY INTERESTED PROFESSIONALS. THE FOUNDATION'S ACTIVITIES INC
Vision 10/10 points Vision 10/10 points
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.
A treatment, therapeutic or cure for those living with KdVS.
Source: Nonprofit submitted responses
Goals 20/20 points Goals 20/20 points
The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.
Goal One: To educate our community and others about the impacts of KdVS and resources available to those families living with KdVS.
Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.
Goal Two: To create awareness among the public and medical community about KdVS to allow for better understanding of signs, symptoms, and diagnosis.
Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.
Leadership Development 15/15 points Leadership Development 15/15 points
The nonprofit provides evidence of investment in leadership development
Describe an investment in leadership
Over the past 12-18 months, our team has attended webinars to further our understanding of rare disease. We have attended and plan to attend future conferences to grow our network of resources available to our community.
Mobilizing for Mission 15/15 points Mobilizing for Mission 15/15 points
The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.
This organization mobilizes for mission in the following ways:
Networks of Collective Impact Efforts
Thought Leadership
Raising Awareness
Community Building
Policy Advocacy
What are this organization’s external mobilizaton efforts?
The KdVS Foundation has formed partnerships with other rare disease nonprofits. We have joined already organized groups afflicted with similar struggles as our community. Our Medical Advisory Board is researching KdVS and disseminating this information through medical journals and conferences. Our team regularly attends training and meetings with national foundations to improve our understanding of the symptoms of KdVS and others. We maintain active social media accounts and email our community regularly to inform them of the recent activities. Recently we participated in the Rare Disease Congressional Caucus to inform our elected officials of our syndrome and other rare disease disorders.
Adaptability Story 30/30 points Adaptability Story 30/30 points
The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
Over the past year, we have been in contact with more researchers to expand our mission of research. We have held more webinars to increase education in our community. The KdVS Foundation has been in contact with more families to welcome them into our community and provide support.
Impact & Results
Accountability & Finance
Culture & Community
Leadership & Adaptability
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