Hearing Patients and Their Caregivers First Hand at the RARE Patient Advocacy Summit

Kind of on a whim I decided to head to San Diego (a great place for whimsical travel) for the RARE Patient Advocacy Summit by Global Genes.  To be fair, Effie Parks from Once Upon a Gene Podcast had told me about it before and I’d been on the fence on whether I should go or not.  Some other friends chimed in about being in San Diego as well, and I decided to last minute attend the event. I’ll admit that as an IT person focused on health IT, I initially felt like a fish out of water.  Luckily, I bumped into a number of amazing patient advocates (@rarelikeher and @BarbyIngle) and caregivers (@EMoriartyWade) I’ve known on Twitter, and so I felt at home pretty quick.  It’s incredible how knowing a few people can change your experience at a conference.  It’s also wonderful that Twitter brought us together for years before we met in person. What’s amazing about this event is that everyone you met had a story to tell.  As I walked through the exhibit hall, I started to realize that the majority of exhibitors were foundations or other organizations that were largely started due to some experience in the health system.  Everyone had a story to share about themselves or someone they loved. As an emotional person, I’ll admit that it was slightly overwhelming to sit and hear their stories.  And yet, I also wanted to hear every story.  Each experience was unique and there was a camaraderie at the event that was special.  I commented to E...
Source: EMR and HIPAA - Category: Information Technology Authors: Tags: C-Suite Leadership Clinical Communication and Patient Experience Healthcare IT Barby Ingle Caregivers Effie Parks Erin Moriarty Wade Global Genes Once Upon a Gene Patient Conferences Patients Rare Disease Rare Disease Conferences Source Type: blogs