Patient advocacy Archives | Page 2 of 7 | Rheumatoid Arthritis Warrior

PCORI – Creating a Culture for Patient-Centered Research

Note! For more snapshots including the posters summarizing the PCORI workshop - click here. This weekend I attended a PCORI workshop called Transforming Patient-Centered Research: Building Partnerships and Promising Models. I’ve watched some PCORI meetings in the past since they use live stream webcasts to provide transparency. Here are some of my impressions regarding the weekend...Continue reading      11 Comments » Read more

Invisible Illness Awareness Video

Positively Real: Keeping the Discussion Real without Sugar Coating Everyone with an “invisible illness” owes such a debt to Lisa Copen, founder of Invisible Illness Awareness Week. She has done so much to provide support to people with “invisible illnesses” like Rheumatoid disease. I don’t know if she coined that term, but she certainly popularized it. This...Continue reading      6 Comments » Read more

Red Feet, Frankenstorm, Unexpected Sympathy, and Travel to PCORI Workshop

Tiger and I left home for the PCORI conference today in D.C. in spite of the fact that many in the D.C. are evacuating from the area! Schools were closed on the Space Coast due to Hurricane Sandy, dubbed #Frankenstorm. In Florida, Sandy wasn’t as big a deal as the half a dozen other hurricanes we’ve...Continue reading      5 Comments » Read more

We’re Warriors So Fighting On Is Just What We Do

August. We were exhausted and happy after a successful exhibit at the Rheumatology Nurses Society annual meeting. Five minutes later, I realized I was still buried in Rheumatoid Patient Foundation (RPF) projects preparations for the RPF’s next exhibit at the American College of Rheumatology Scientific Meeting in Washington, D.C. in November. And, then the hard drive...Continue reading      14 Comments » Read more

Sample Size: 1 of Every 100 RA Patients in U.S. Are Members of Our Facebook Page

Transparent objectives of a patient community As the author of this blog, I’m completely transparent about why I’m here: Stunned at learning what so many RA patients endure, I committed to doing everything possible to change that. The 3 specific goals have been the same for 3.5 years on the About Page, as created during the first...Continue reading      18 Comments » Read more

The Powerful Health Care Role No One Really Wants: Being a Patient

The valuable knowledge of patients with diseases like RA Today, Katie Beth and I flew home from San Francisco where I spoke three times this week: There was a presentation about the value of patient input with chronic conditions like rheumatoid disease, a panel discussion about e-patients and e-docs at Digital Pharma West, and an informal address...Continue reading      17 Comments » Read more

Energizing E-patient Engagement – Collaborations that Count

This blog is not about me because it’s always been much more than a way to share my own journey. This blog tells OUR story – the true story of Rheumatoid disease, the people who live with it, the fight to cure it, and the process that patients have entered to participate in improving our...Continue reading      6 Comments » Read more
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