LYMEPOLICYWONK: Patient-Powered Research and Lyme Disease

15 Jul
Patient centered

Many of you know that I am a patient representative for the Patient Centered Research Institute (PCORI), a government funding organization that seeks to put patients at the center of research. Last week, I was fortunate to be a co-author of an article in Health Affairs—together with the lead team at PCORI. The article describes the importance of patient powered research. But what is patient powered research and why is it important to the Lyme community? Continue reading

LYMEPOLICYWONK: The bogus grassroots of the American Lyme Disease Foundation

08 Jul
grasses one tick 300 dpi square

I have been getting calls lately from patients who go to the website of the American Lyme Disease Foundation (ALDF), mistakenly believing it is a patient website. It’s not, and it’s easy to get confused. You have LymeDisease.org (LDo), the “Lyme Disease Foundation” (LDF), and the “American Lyme Disease Foundation” (ALDF). All three sound like patient advocacy organizations, but the ALDF is not. Continue reading