Just a quick note to say that I’m planning to attend the combined annual conference hosted by PSC Partners Seeking a Cure and the AASLD Liver Meeting in Denver starting next week.
It isn’t typical that the PSC conference, with a typical audience of patients and caregivers, is happening at the same time and venue as the AASLD even, which is attended by medical practitioners. So this is a rare opportunity to do both, one immediately following the other. The PSC conference payment and credentials allow entry into both events, despite that patient participation in the medical sessions is limited to a smaller set of “patient-facing” talks.
I have a couple different goals for the two events:
- To make at least a handful of genuine personal connections that will continue after the events end. The online groups are very nice, but I’ve been missing a deeper relationship with people who are facing the same kinds of uncertainty.
- To be better informed about the types of research underway for PSC. I feel pretty up-to-date based on online sources, but there’s research that’s still unpublished and there are questions or nuances that can be better captured by in-person discussions.
- To find a way to become involved in the community in a meaningful way…or at least get started on this path. I’ve tried emailing marketing personnel at various PSC and rare disease organizations to offer intern-level assistance in my professional areas of expertise. I’ve filled out forms to participate in “patient-led” research discussions. I’ve applied to be on a community action board relative to cholangiocarcinoma. None of these have borne any fruit. I successfully participated in some legislative advocacy sessions, but they mostly served to reinforce the idea that I’d rather be involved in medical research than politics. So hopefully there will be some way forward.
Here are links to the events. I’ll provide an update afterwards.
PSC Partners Seeking a Cure Annual Conference
My own hepatologist has several pieces of research at the event and will be moderating a session. It’d be nice to say hello.