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Review for Dysautonomia Support Network, Providence, RI, USA

Rating: 5 stars  

I am the dad of two daughters with Ehlers Danlos Syndrome (EDS), with one who also has Postural Orthostatic Tachycardia Syndrome (POTS). In seeking information that I could actually understand about the disorder and seeking to meet other patients and caregivers I ran across many organizations with great resources....

The most welcoming and informative of them all was Dysautonomia Support Network (DSN). We thought so much of the organization that my wife joined the Board of Directors, led the Fundraising Team, and ultimately was voted in as the President of the organization after several years as a member. Our family hosted a Fundraiser in the Fall of 2018 to spread awareness and raise funds for the organization.

DSN is a true community that supports one another to live their best life.

This photo is my family at an awareness event from the Fall of 2018. If you are on the hunt for a supportive group that is about more than your disease, has information on the disorders, doctors, school and work supports etc....check DSN out! The 2 best places to connect with DSN are on our website, and on our many FaceBook group organized by regions and interests (such as crafting, cooking, military families etc.) #dysfamily, #DSN

Role:  Volunteer