Disease, Disorders, Medical Disciplines

Dysautonomia Information Network

aka DINET

Swanzey, NH

Mission

DINET’s mission is to provide an online community that will support those living with dysautonomia. To increase knowledge and education within the medical community leading to a faster time for diagnosis and treatment of the debilitating symptoms of this disorder.

Notes from the Nonprofit

Dysautonomia Information Network is licensed and registered in the state of Michigan, however, our organization offers web-based support serving patients and caregivers internationally. Our volunteers are located in the U.S., NZ, Aus, UK and The Netherlands. We provide educational materials online through our site and in-person through the work of volunteers and support groups. Through the use of technology, DINET is able to offer support 24/7 to the dysautonomia community, as well as keep operating costs to a minimum. Being a web-based organization allows DINET to remain flexible and responsive where we are most needed.

Ruling Year

2003

President Board of Directors

Mrs. Ellen Driscoll

Board Member

Chelsea Goldstein

Main Address

PO Box 10057

Swanzey, NH 3446 USA

Keywords

dysautonomia, orthostatic intolerance, postural orthostatic tachycardia syndrome, neurocardiogenic syncope, pure autonomic failure, multiple system atrophy, postural tachycardia syndrome, fainting, low blood pressure

EIN

27-0047290

 Number

2264754564

Cause Area (NTEE Code)

Alliance/Advocacy Organizations (G01)

Alliance/Advocacy Organizations (E01)

Health Support Services (E60)

IRS Filing Requirement

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

Social Media

Programs + Results

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Our programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

SOURCE: Self-reported by organization

DINET Moderated Patient Forum

Dysautonomia News

Where we workNew!

External Reviews

Financials

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Operations

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Board Leadership Practices

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SOURCE: Self-reported by organization

BOARD ORIENTATION & EDUCATION

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?

Not Applicable

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Not Applicable

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

Not Applicable

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

Not Applicable

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?

Not Applicable

Organizational Demographics

In order to support nonprofits and gain valuable insight for the sector, GuideStar worked with D5—a five-year initiative to advance diversity, equity, and inclusion in philanthropy—in creating a questionnaire. This section is a voluntary questionnaire that empowers organizations to share information on the demographics of who works in and leads organizations. To protect the identity of individuals, we do not display sexual orientation or disability information for organizations with fewer than 15 staff. Any values displayed in this section are percentages of the total number of individuals in each category (e.g. 20% of all Board members for X organization are female).

SOURCE: Self-reported by organization

Gender

This organization reports that it does not collect this information for Board Members, Senior Staff, Full-Time Staff and Part-Time Staff.

Race & Ethnicity

This organization reports that it does not collect this information for Board Members, Senior Staff, Full-Time Staff and Part-Time Staff.

Sexual Orientation

This organization reports that it does not collect this information for Board Members, Senior Staff, Full-Time Staff and Part-Time Staff.

Disability

We do not display disability information for organizations with fewer than 15 staff.

Diversity Strategies

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We track retention of staff, board, and volunteers across demographic categories
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We track income levels of staff, senior staff, and board across demographic categories
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We track the age of staff, senior staff, and board
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We track the diversity of vendors (e.g., consultants, professional service firms)
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We have a diversity committee in place
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We have a diversity manager in place
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We have a diversity plan
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We use other methods to support diversity
Diversity notes from the nonprofit
We are focused on supporting disabled people and their caregivers. We have an open, supportive environment that supports all gender, ethnicity, race and sexual preference. We include research and information related to illnesses and disorders that are genetically bound to specific ethnicities, gender or race. We are working towards the publication of translated documents with key medical information.