L. Johnson on Meaningful Patient Representation on the next TBDWG

Lorraine Johnson, JD, MBA, Chief Executive Officer of LymeDisease.org delves into the importance of meaningful patient representation on the Federal HHS Tick-Borne Disease Working Group (TBDWG) in her latest blog.  This is especially important as we await the announcement of panelists to the new TBDWG charged with the next report to Congress due in 2020. A recent patient survey conducted by lymedisease.org  found “To be a meaningful representative, patients chosen for a panel should: a) have or be a caregiver to a patient with chronic Lyme disease and b) should be an officer or director or someone vetted and approved by a recognized and trusted patient advocacy group (PAG) or someone approved by a PAG.” Read the entire blog by Lorraine Johnson here:

LYMEPOLICYWONK: Who represents Lyme disease patients? Why it matters.