Patient advocacy Archives | Rheumatoid Arthritis Warrior

PCORI, Is It Worth It to Include Patients?

The patients who read this blog are like dear brothers and sisters to me. I’ve met many in person and it’s like a family reunion. The RAW website and blog obviously speak to others as well – lay and professional caregivers, rheumatology industry, and sometimes the larger patient engagement movement. We’re working hard for change...Continue reading      6 Comments » Read more

We Must Celebrate! Your Voice Was Heard, Despite My Limitations

Months – actually years – of my life went into the last couple of weeks. It’s a peculiar feeling when it all comes together in a moment. While there are important points to dig into from the annual ACR meeting, we should pause for a moment to reflect on where we are. (A recent Spear...Continue reading      26 Comments » Read more

Sleepless in San Diego

Each fall, Katie Beth and I travel to wherever the American College of Rheumatology (ACR) holds its annual scientific meeting. Last night, we arrived in San Diego. 1) This is huge. The Rheumatoid Patient Foundation (RPF) is presenting an exhibit in the Exhibit Hall. 2) I’m speaking with two other RPF volunteers in a session on Tuesday...Continue reading      12 Comments » Read more

Gatecrashing: The Story of Rheumatoid Patients at the ACR Meeting

It’s bedtime here. How about a bedtime story? Once upon a time in Philadelphia- ACR 2009 After being diagnosed with Rheumatoid Arthritis in 2006, I read some articles from reliable hospitals like Johns Hopkins. Sometimes I looked up symptoms online or read patient comments on large websites like Health Central or WebMD. Eventually I entered discussions with...Continue reading      24 Comments » Read more

An Absolutely Vile Disease, the “a” Word, & New RA Animated Video

RA Veterans animated video Last year, I got a call from a woman named Courtney floating a trial balloon on creating an animated video for RA patients. After some discussion, I agreed it could be interesting, but with a few “ifs” like if it’s positive, honest and realistic, and if its not insulting to patients. Courtney’s...Continue reading      17 Comments » Read more
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