Search Results for: Patients Included

Tell the World: Daddytom Shares His Experiences with Parkinson’s

Parkinson's Disease / By

To continue our series in honor of Parkinson’s Awareness Month, here’s another interview to bring you “the patient voice.”   We recently featured this interview with three-star member daddytom in the April edition of our Parkinson’s Community newsletter. Read on to learn what he has to say about finding courage, recognizing mentors and raising awareness about […]

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It’s Rare Disease Day!
Interview with Gracie (Devic’s NMO Patient)

6 Comments / Patient Experiences / By

Today, we’re joining the National Organization for Rare Disorders (NORD) to help raise awareness for Rare Disease Day.  In recognition of the day, we recently interviewed Gracie, a valued member of our Devic’s Neuromyelitis Optica (NMO) community. Devic’s NMO is a rare autoimmune inflammatory disorder which affects the optic nerve and spinal cord and is

It’s Rare Disease Day!
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Harnessing New Media for Patient Advocacy (Part II)

3 Comments / Epilepsy, Fibromyalgia, Multiple Sclerosis, Parkinson's Disease, Patient Experiences / By

A few weeks ago, I was invited to present on behalf of PatientsLikeMe at the Arthritis Foundation workshop held in Newport, RI.  The presentation was on how to “harness new media for patient advocacy” – the same as what I presented at a workshop for non-profits in northern New England in August.  This time the

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