by Society for Participatory Medicine Volunteers | Jul 28, 2016
Rare diseases often get the short end of the stick when it comes to accessible information and resources. That’s why we’re pleased to offer this index of rare disease resources for patients, caregivers, and health care professionals. National Organization...
by Mayank Agarwal | Jul 28, 2016
My name is Alexandra Albin (msaxolotl on Twitter) and I have an orthopedic condition called osteonecrosis or avascular necrosis (AVN). AVN is a painful and debilitating bone disease that typically affects long bones, is caused by a loss of blood supply to the bone,...
by Mayank Agarwal | Jul 28, 2016
On Halloween night 2014, my mother and I found ourselves sitting in an executive suite at the Verizon Center in Washington, DC, eagerly awaiting to see my favorite band, Fleetwood Mac. I know it may be a little odd that someone my age, which at the time was 21, is...
by John Hoben | Jul 14, 2016
Realizing personalized medicine’s full benefits will require active patient involvement. This is the first in a series of articles defining personalized medicine in the context of participatory medicine. The series will explore how current best practices can...
by Mayank Agarwal | Jul 14, 2016
Anyone who has been given a diagnosis and recommended treatment has to make a decision. But how is that decision made? What facts are provided? My experience and assessment of the professional state of the art: not enough. During the years I spent writing my book The...
by Mayank Agarwal | Jul 14, 2016
I first met SPM-er and palliative physician, Dr Michael Fratkin on twitter. Michael’s re-imagined end of life caring through video conferencing is amazing unto itself, but more importantly what resonated for me are his insights into dying not as a medical dilemma but...