Amanda Marie

Patient Leader

I understand the challenges that Dysautonomia and Ehlers-Danlos Syndrome can bring from the perspective of the patient, advocate, caregiver, and nurse. I have combined my professional knowledge and personal experience to create a patient-focused, global support network that encompasses 65 support, and lifestyle clubs, created to improve the patient experience. As the President of the Dysautonomia Support Network, I have had the privilege to create programs such as DSN volunteer programs, scholarships and service dog grant programs. In 2018 have educated, raised awareness with researchers at the NIH, lobbied for research funding on Captial Hill and presented patient workshops at conferences.

Location

Johnston, RI

Nominations

Healthcare Collaborator: Patient Lifetime Achievement Best in Show: Facebook

I once had a doctor tell me, "This is one of those things that when you see it you know it...it's not complicated." I could easily say the same for Amanda and this award, Her advocacy for dysautonomia and related disorders began long before her creation of Dysautonomia Support Network. She has worked tirelessly for years changing lives.  — Michelle

Past Awards Participation

Sixth Annual WEGO Health Awards

Nominations

Advocating For Another Best in Show: Facebook
Amanda Marie

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