The Society for Participatory Medicine (SPM) will have a small but important presence at the upcoming World Orphan Drug Congress, June 9-11, at the Boston Convention and Exhibition Center.   Anyone who knows me knows I have a heart for the rare disease community that runs deep.  I have worked with organizations like the Barth Syndrome Foundation BSF), the Everylife Foundation, the Friedreich’s Ataxia Research Alliance (FARA), and Rare New England (RNE).  I also host the Raising Rare podcast, where we talk to parents raising rare kiddos.

I find the scientific challenges and progress toward treatments for rare diseases to be very intellectually stimulating and satisfying.  Although I have not been directly affected by one of these disorders, the strength, resilience, and bonds of this community compel me to do more.  I truly enjoy being with these people.

But why would SP get involved?  Why show up at a congress that is clearly designed for the biopharma industry?

The simple answer is because the event attracts hundreds of Participatorians.  Rare patients and families practice participatory medicine (PM) with their providers all the time, and vice versa.  They have no choice.

They will be very interested in what we have to say because we are putting a name to what they already do.  And we are very interested in talking to them so that we can learn how PM works under the most extraordinary circumstances.  They can teach us what patients and providers really need to make PM easier.  They can also teach us what gets in the way – believe me they are well-versed in the need for EHR interoperability.

A quick scan of the agenda reveals a smorgasborg of topic areas: basic scientific innovations, public policy, data & technology, ethics, i

nvesting, marketing, regulatory affairs, representative clinical research, mental health, and insurance.  The sessions include large audience plenary sessions, smaller group deep dives, and even individual posters.

And in the center of all this action is the Expo Hall, where we will have our booth.   We are fortunate that our booth sits right near the entrance to the Café.  A prime traffic area.

The point is that while the Congress provides many opportunities to learn, it provides an even greater opportunity to talk to a wide sp

ectrum of stakeholders interested in PM. We have the opportunity to introduce them to our thinking. We have the opportunity to invite them to join in our effort.  We have the opportunity to grow our network.

But we need your help!

We need SPM members present at our booth from breakfast until the happy hour reception.  We are looking for people to take 1-2 hour shifts on June 10 and 11 (June 9 does not include the Expo Hall.)  All you need to do is welcome people, tell them about PM and SPM, and hand them information.

lease contact Mary Hennings or Kevin Freiert if you can help, or if you want to learn more.

We have complimentary passes for full Congress access for all three days.  You can request yours at WODC@participatorymedicine.org