It was fabulous having the opportunity to see our Global Alliance members face to face again in 2022. After a number of years of waking at 1 am to join Video Meetings and hear what everyone was up to, it was great to be in the same room with many of our colleagues.
This year, the event was hosted by PDSA.org in Seattle, Washington, and it didn’t disappoint. With the heatwave experienced in this part of the world – highs of 34 degrees – it was great to shed the winter wardrobe, bask in the sunshine, and enjoy the warmth.
At the meeting, we had ITP Patient leaders from many countries, including Italy, Brazil, Israel, the Netherlands, Denmark and the USA. We were also joined by a number of countries via video link that were not able to attend.
We were joined by several pharmaceutical companies with ITP Treatments both currently available and in clinical trials, so they could hear about all the amazing work being done across the globe by the various patient groups.
After each patient association gave their updates, we had presentations on the use of social media to boost organisation profiles amongst patients – we’re lucky here in Australia as we have nearly 1000 patients now following across the various social platforms, and then I gave a presentation about Advocating for Change, focusing on the recent PBAC recommendations for improved access to TPROA treatments, including Revolade and NPlate.
During this presentation, I highlighted the importance of having patients come along on the journey, as they are ultimately the ones being impacted.
After a short break, we then had presentations on the various new treatments in development from Sanofi and Argenx, followed by a general catch-up with Novartis.
The PDSA Meeting commenced on the following day with over 160 people in attendance from the USA and from 10 countries.
The conference included a host of leading ITP clinicians, including our very own Medical Advisory Board Members Dr David Kuter, Dr Terry Gernsheimer, Mr Michele Lambert and Dr John Semple.
Our very own Bethany from WA, also shared her story during the conference showing just how similar patient experiences can be regardless of where you live in the world. Great job, Bethany, for flying the flag for Australia!
Thank you again to our amazing colleagues in the United States for hosting us all, and we look forward to where 2023 will take us.
See more about the PDSA Patient Conference by visiting PDSA.org/conferences.html