Stories

ePatient Dave (aka Dave DeBronkart) is one of my personal heroes. While many pay lip service to helping patients to help themselves– Dave is a synonym for “patient advocate,” who through his myriad activities, speaking engagements and informative epatientdave.com website is a tireless champion for patient engagement and source of ideas and inspiration on how to use the Web for better patient outcomes.

This week Dave up a post on his website on e-Patient Resources for Parkinson’s Disease, which provides some basic info that’s worth a look from anyone interested in PD. As I’ve known Dave for several years, I reached out to him to provide a more in-depth (but, admittedly incomplete) listing of some of the top online resources for people with Parkinson’s disease, as well as PD caregivers and professionals. Here’s (for those who follow The Theracycle Blog) is the list of Bookmarks for Parkinson’s e-Patients, that we prepared and sent to ePatient Dave…

Bookmarks for Parkinson’s e-Patients
(Source: The Theracycle Blog) 

Associations and Foundations focused on Parkinson’s Disease:

American Parkinson Disease Association  www.apdaparkinson.org

California Parkinson Group   www.calparkinsons.org/

Davis Phinney Foundation  www.davisphinneyfoundation.org

Michael J. Fox Foundation for Parkinson’s Research   www.michaeljfox.org

National Parkinson Foundation  www.parkinson.org

National Young Onset Center (part of APDA) www.youngparkinsons.org

Northwest Parkinson Disease Foundation  www.nwpf.org

Parkinson Disease Foundation  www.pdf.org

Online Patient Communities

Parkinson’s Patients Support Group www.ppsg.org/

Parkinsons Disease Forum  http://www.allaboutparkinsons.com/forum/

PatientsLikeMe  http://www.patientslikeme.com

23andme   https://www.23andme.com/pd/

Parkinson’s Blogs:

All About Parkinson’s Blog  http://www.allaboutparkinsons.com/

Parkinson’s Blog Network  http://www.parkinsonsblognetwork.com/

The Theracycle Blog  http://blog.theracycle.com/

Parkinson’s Bloglist https://xtheracorp.wpengine.com/articles/Theracycle-Bloglist.aspx

Other:

Delay the Disease   http://delaythedisease.com/

Fight for More  http://www.fightformore.com/

The Parkinson Alliance   http://www.parkinsonalliance.org/

Parkinson’s Institute    http://www.thepi.org/

PD Online Research  http://www.pdonlineresearch.org/

Parkinson’s UK  http://www.parkinsons.org.uk/

Parkinson’s Unity Walk   http://www.unitywalk.org/

Ride with Larry   http://ridewithlarrymovie.com/

World Parkinson’s
Congress  (October 2013)  http://www.worldpdcongress.org/

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