Helping the Healthcare World Understand Rheumatoid Disease

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red suitcase for ACRThe “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 website and community has helped them. But they also plead for change and ask what we can do together to make the world understand that Rheumatoid disease is not “a type of arthritis,” but a systemic disease. They tell me…

  • They want a way to prove and measure disease activity.
  • They want the far-reaching range of their symptoms to be understood.
  • They want safe effective treatments.
  • They want answers for themselves and their children about preventing the disease.
  • They want a cure.

THIS makes sense! And that’s why we founded the Rheumatoid Patient Foundation (RPF). If you are a patient, care giver, researcher, or health professional, I hope you will join us today.

Meanwhile, I’m not going to D.C. just because I love the Redskins! I want to tell you why this is so important. Please watch the video below and read the links I’ve gathered this morning to bring you up to speed on why we are spending our time and energy on this.

Why spend all this time and expense again to attend the ACR meeting this year?

The American College of Rheumatology Scientific Meeting (ACR) is a professional, scientific meeting. It is mainly research driven, although there is a huge commercial side to it. Anyway, the audience is unmistakably medical professionals. I’ve even been told that there are few media who attend such conferences, compared with the old days, since everything is accessible online once it’s released. I disagree and hope you’ll read here about how the context of the ACR meeting itself expands understanding.

Some countries are finding that their rheumatology scientific meetings are more complete with patient voices as actual session participants. Perhaps that will eventually be true in the United States with the ACR as well. Meanwhile nothing is holding back the Rheumatoid Patient Foundation (RPF) who will be exhibiting for the second time this week when we are not even two years old!

Why go to the ACR meeting? How can it help patients?

Watch this Mayo Clinic video interview about ACR where I answer that question in 3 minutes.

What happens at an ACR meeting?

Read my report on ACR from last year for Pharmaphorum here.

Why do we need the RPF and why does RPF exhibit at the ACR meeting?

We will have about a dozen volunteers again at ACR with lots of great resources to both help health care professionals understand the patient experience of Rheumatoid disease AND for clinics to offer as support for their patients! I really hope that you’ll find time today or this week to read about why we need the RPF at ACR as I reported it in the Society of Participatory Medicine Journal.

Recommended reading

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Kelly Young. All rights reserved.

This entry was posted on Friday, November 9th, 2012 at 12:00 pm and is filed under Special Occasion, The Real Rheumatoid Disease. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.


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