2017 Transplant Patient Summit

I was notified a little over a month ago that I was selected for the first-ever American Society of Transplantation (AST) Patient Summit in October.

I’m excited because it’s the first time that this society has offered something like this & it’s totally transplant community focused.  Two donors or recipients are chosen from each state to participate to become ambassadors with focuses on legislative/regulatory policy & fundraising.

I know these areas I have some rare disease experience in, but welcome more training from the transplant side of things. I also look forward to meeting other people.

Expenses are covered, so although we are not paid, everything is provided for us which is nice.

I know my rare disease organizations have always been good about covering expenses for in-kind donations, volunteering to help/lead sessions, or offering scholarships to defray the cost.

But many “patient-focused” opportunities still don’t.

It’s a prime reason why I pick & choose things more carefully.  It’s been an even exchange in my rare disease communities often, but other general major medical conferences have a speaking budget & pay everyone BUT their “patient” speakers.

They expect us as participants to foot the bill for everything including conference fees & hotels while they cover expenses & pay everyone else. Some may argue well it’s name or notoriety thing but it’s truly not inclusive then with those attitudes.   There are some exceptions but not many.

Many of these conferences are put together by large societies (much like the AST).

This is why I was happy to see them take this direction instead.

I also know there is some concern when there is drug company sponsorship involved but I understand especially for first time events, they do need sponsorships to defray or share costs.

As long as these sponsorships don’t interfere with sessions or dictate what can be discussed or expect anything from me in return, I’m fine with it.

I have seen though the case of the blurred line so I am not naive to this problem.  I have faith that the AST wants what’s best for all concerned, especially for a first time event.

I’m looking forward to it.  Someone else I know is also going, so that will be great.

It will be one of my first times traveling (by train) since transplant.  I’m slowly working my way out of the bubble.

(photo credit: AST website)