DYSAUTONOMIA SUPPORT NETWORK

aka DSN   |   Providence, RI   |  www.DysautonomiaSupport.org

Mission

DSN is a U.S. based, 501(c)(3) non-profit whose mission is to provide a community that empowers and supports those affected by dysautonomia to live their best lives. Visit dysautonomiasupport.org to learn more.

Ruling year info

2016

Interim President

Brooke O'Shea

Main address

140 Pitman Street Unit 106

Providence, RI 02906 USA

Show more contact info

EIN

81-2867640

NTEE code info

Specifically Named Diseases (G80)

Neurology, Neuroscience (G96)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The lack of awareness, advocacy, and support for patients with Dysautonomia and its co-morbid conditions such as Ehlers-Danlos Syndromes, Chiari Malformation, Mast Cell Disorders, and Gastric Motility Disorders.

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?

Dyscovery Education

DYSCOVERY EDUCATION
Join us as we “dyscover” and learn from medical experts in our field.

Population(s) Served

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.

We strive to improve the quality of life of patients worldwide by increasing understanding, awareness and access to appropriate medical care for all patients. We aim to dispel the misunderstanding and prejudice that many medically complex patients face in medical settings and in society as a whole.

By using technology and working with other organizations, physicians, researchers and advocates in our field we are aligning to increase the scientific understanding of the relationship between dysautonomia, and related conditions in the hope of finding new treatment options and improve the patient experience. We help patients through every stage of their journey, from diagnosis to advocacy. We promote a positive but realistic community for those living with chronic illness and pain. We increase confidence and independence in our members by supplying them the tools, support, education and resources they need to adapt to life with chronic illnesses while challenging themselves to set new goals despite their physical limitations.

We train our volunteers to assist others, using technology to provide peer to peer support, education, and resources online. We have a talented and skilled team of volunteers who advocate on a national level and collaborate wherever possible. We are committed to using open, accessible, communication, using technology to advocate, educate and empower members, volunteers, and providers with the highest standards of safety, integrity, and transparency with a collaborative approach to improve the patient experience in an inclusive environment with respect for all individuals.

DSN currently offers online support and resources to over 25, 000 people online in over 55 countries, we plan to expand our reach. Our trained volunteers moderate 60 support groups and 10 Lifestyle Clubs on Facebook, and Inspire support Forum and offer a patient registry and APP on Backpack Health. We also host local and virtual events and meetings. We have awarded 8 educational scholarships and 6 service dog grants since 2016. We plan to increase our advocacy initiatives and training in 2020.

Financials

DYSAUTONOMIA SUPPORT NETWORK
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Operations

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

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Connect with nonprofit leaders

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DYSAUTONOMIA SUPPORT NETWORK

Board of directors
as of 10/05/2022
SOURCE: Self-reported by organization
Board chair

Brooke O'Shea

Dysautonomia Support Network

Term: 2020 - 2021

Joanna Behm

Dysautonomia Support Network

Patricia Meegan

Dysautonomia Support Network

Cathy Murdick

Dysautonomia Support Network

Kevin McGrail

Dysautonomia Support Network

Ashley Collins

Dysautonomia Support Network

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes