Dysautonomia Information Network

aka DINET   |   Swanzey, NH   |  https://www.dinet.org

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 info

2003

President Board of Directors

Mrs. Ellen Driscoll

Vice President, Board of Directors

Lauren Mlack

Main address

PO Box 10057

Swanzey, NH 03446 USA

Show more contact info

EIN

27-0047290

NTEE code info

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.

Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Dysautonomia continues to be a disorder that is often misdiagnosed and misunderstood within the medical community. Therefore, patients are not always given the support or information they need to understand their illness and manage their symptoms. Compounding this problem is the reality of living with an invisible, chronic illness. Dysautonomia can include syncope, which is undeniable and a very obvious result of the disorder. However, it also includes an array of wildly varying symptoms affecting things like the organization of thought (brain fog), digestive issues, heat intolerance, BP and HR fluctuations, & extreme fatigue, just to name a few. These symptoms, though very common, can seem unreal to family and friends. And it is difficult for people to understand how your body can be so unwell when you look so healthy. This causes the patient to feel unsupported, depressed & frequently very anxious, negatively affecting their health further.

Our programs

SOURCE: Self-reported by organization

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

DINET Moderated Patient Forum

A moderated forum focused on living with dysautonomia and providing support to others living with the illness or caring for someone with dysautonomia. The forum is moderated to be sure patients are not solicited, offered medical advice from non-professionals and to be sure patients stay on topic.

Population(s) Served
People with diseases and illnesses
Caregivers

Quarterly newsletter featuring articles written by dysautonomia patient and caregivers on a wide variety of topics related to living with chronic illness. A Medical Q & A column with questions submitted by members and answered by our Medical Advisors. A collection of the latest research and available studies related to dysautonomia disorders.

Population(s) Served
People with diseases and illnesses
Caregivers

The Speaker Series began in 2021 featuring 3 presentations by leaders in the field of dysautonomia treatment and research and ended with a roundtable discussion about the collaboration between patients and medical professionals towards achieving good outcomes. This series will continue with discussions about topics relevent to the dysautonomia community including lifestyle issues for chronically ill people, disparity in the healthcare system and further discussion on COVID-19 post illness syndrome. The Speaker Series gives DINET an opportunity to present information as well as receive information from people living with dysautonomia.

Population(s) Served
People with disabilities
People with diseases and illnesses
Adults
Adolescents
Caregivers

Where we work

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Our goal is to provide support to patients and information that can help them manage their symptoms and live the best quality of life they can as a person with dysautonomia. We hope to encourage patients to find ways to help themselves through a variety of lifestyle changes and to help them adapt to their new "normal" and learn to thrive again. Our goals also include outreach to the medical community to spread awareness and education about the ways a patient may present when they are suffering from disorders of the autonomic nervous system.

We provide a wealth of information and discussion about every aspect of living with dysautonomia, including diagnosis, causes, treatments, lifestyle issues, support, symptom management, listings of specialists, current research studies and links to other resources available to them. Our strategy is to reach the largest amount of patients and caretakers by sharing this information on multiple platforms in a variety of presentations. All of the information we provide on our site, including the moderated forum discussions, are keyword searchable and categorized to be easily found online. We use Facebook, Instagram and Twitter to reach a larger audience and to reach international audiences as well. We recently launched a new YouTube channel to provide short videos for visual presentations. And we use email and snail mail to reach audiences through print handouts, packets, and newsletters.

We rely heavily on our online programs to reach newly diagnosed and established patients with our services. We are well established with the NIH, Autonomic Research Panel and other resources that list our organization as a referral for support and information. DINET is guided by a Medical Advisory Board that includes the leaders in research and treatment in this field and patients find our services through these contacts as well. Our organization also relies heavily on our social media channels that are all uploaded several times a week. Our volunteers are patients living with dysautonomia and caregivers, giving DINET the advantage of understanding first-hand the information needed and topics most on the minds of the community. DINET has a writer's group that produces new material for the website as well as written materials for family and friends of patients. DINET recently welcomed a mental health professional to our board to advise us on the issues faced by people living with chronic illness.

DINET also relies on outside vendors for additional project work and tasks outside of the volunteer group's responsibilities.

According to Constant Contact, the company we use to manage our email campaigns, we have a 35% open and 30% click rate on average. This compares to the average in the health category of 18%. We consider this a great accomplishment and reinforces the need to reach out with this information. Our forum membership has been steadily rising over the last two years, growing from a current active membership of 3500 to our current active membership of 5005 (total membership is 11,000 (+/-). All of these numbers mean that we are reaching more patients and caregivers and we are providing the support and information they need.

The recently launched Speaker Series offered information and education for our patient population but we also had sessions that included EMS workers and medical students as well as medical practitioners. These sessions were pre-recorded but did include Q & A sessions during the broadcasts.

We plan to expand the Speaker Series to include some live sessions to give audience members a chance to communicate directly. We plan to continue to build on the momentum established in 2021 and pursue larger audiences within the medical community. We plan to include more topics related to the disparities that exist in the medical community and additional sessions on the collaboration between patients and their providers.

In 2022, DINET will be supporting dysautonomia research being done by the Dysautonomia Clinic in NY under the guidance of Dr. Svetlana Blitshteyn. In addition to the benefit of supporting an important study, we will also be promoting awareness of the DINET organization to the medical community and most importantly to medical students who may not have heard of dysautonomia.

We will also continue to expand the services offered on the YouTube channel, Twitter and Instagram platforms to reach more patients with the information they need.

Financials

Dysautonomia Information Network
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Operations

The people, governance practices, and partners that make the organization tick.

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Dysautonomia Information Network

Board of directors
as of 02/16/2022
SOURCE: Self-reported by organization
Board co-chair

Ellen Driscoll

DINET


Board co-chair

Lauren Mlack

DINET

Term: 2021 -

Ellen Driscoll

DINET Dysautonomia Information Network

Lauren Mlack

DINET Dysautonomia Information Network

Hallie Driscoll

DINET Dysautonomia Information Network

Lorraine Lohrmann

Dysautonomia Information Network

Organizational demographics

SOURCE: Self-reported; last updated 2/16/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
Decline to state
Gender identity
Female
Sexual orientation
Decline to state
Disability status
Person with a disability

The organization's co-leader identifies as:

Race & ethnicity
Decline to state
Gender identity
Female
Sexual orientation
Decline to state
Disability status
Person with a disability

Race & ethnicity

No data

Gender identity

 

Sexual orientation

No data

Disability