My open letter to “Patients Included” conferences

Carolyn Thomas says it much better than I could. This has been on my mind awhile. I just couldn’t articulate the frustrations as nicely & succinctly as she does here in this post. Worthy of a reblog! Thank you Carolyn for “getting it” & putting this issue out there to conference organizers. Participation shouldn’t be tokenism.

Heart Sisters

different red chair

by Carolyn Thomas  ♥  @HeartSisters

Dear medical conference organizers,

Thank you so much for inviting me to participate in your conference later this year. It is a real honour to be asked to help represent the patient voice at your prestigious event. I know that inviting patients alongside your impressive international roster of well-respected physicians is new to you. So congratulations on embracing the increasingly important “Patients Included” movement sweeping through medical conferences.

But as I once wrote to patient blogger (and conference speaker) Carly Medosch:

“I can no longer afford to be ‘honoured’ by any more medical conference invitations.”

Allow me to explain:

View original post 2,365 more words

Published by:

Nikki

I've been a rare disease advocate for quite some time. I have LAM (lymphangioleiomyomatosis) and TSC (tuberous sclerosis complex). My LAM is severe enough that I needed a lung transplant. Now my TSC has progressed to the point where I now need a kidney. I maintain this blog to raise awareness of my diseases, rare diseases, transplant, organ donation & discuss other important healthcare topics and life with chronic illness.

Categories blog entries1 Comment

One thought on “My open letter to “Patients Included” conferences”

Leave a comment