Posts Tagged ‘Patient advocacy’

  • 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 […]

  • 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 […]

  • 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 […]

  • 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 […]

  • 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. […]

  • What Drives Patients to Get Engaged in Healthcare?

    Did you ever forget what you were about to say? Last year when I testified at an FDA advisory hearing, I couldn’t even remember my name. I swear I could feel my heart leaping six inches in front of me. It was unexpected because I’d recited my five-minute speech dozens of times from memory. How […]

  • Helping the Healthcare World Understand Rheumatoid Disease

    The “don’t-miss-the-plane” rush is on. My suitcase is half packed. I have a fever and I’m not washing my hair today because my wrist can’t muster it. Yet, I’m going to get on that plane to D.C.! Why all this bother? I’ve received messages from thousands of precious people telling their stories and how this […]

  • 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 […]

  • 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 […]

  • 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’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 […]

  • What If Rheumatoid Disease Were Recognized, Properly Funded & Medically Understood?

    Just think. What if you told people you have RA and they actually knew what that meant instead of dismissing it? What difference would it make if Rheumatoid Disease had comparable NIH research funding to understand what causes RA? What if there were treatments that worked for all RA patients? What if newly diagnosed RA […]

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