Patient Advocates Connect at the Annual Meeting
Ali Kujawski, Senior Patient Outreach Manager - June 12, 2024
Patient advocates connected, learned from researchers, and shared experiences at ASGCT's 2nd Annual Patient Advocate Connection Luncheon, hosted at the ASGCT Annual Meeting, highlighting the Society's commitment to engaging the patient community.
The American Society of Gene & Cell Therapy (ASGCT) hosted its 2nd Patient Advocate Connection Luncheon at the Annual Meeting on May 8 to gather patient advocates attending the event in Baltimore. The Society was eager to provide a space for these advocates to take full advantage of the Annual Meeting and the opportunity to seek guidance from both ASGCT’s patient outreach leaders and each other.
Attendees could feel the enthusiasm as they entered the room, an oasis built just for them in a meeting filled with nearly 8,000 attendees. Thirty advocates and six ASGCT committee members sat at full tables together. The room buzzed with conversations ranging from the mental and emotional burdens placed on families to strategies for seeking treatments and sharing favorite resources and ideas. Many of the patient advocates in attendance took advantage of ASGCT’s complimentary registration program exclusive to eligible patient advocates. Here’s what some of the attendees had to say:
“I met some terrific people and learned a lot. My own patient community for my son‘s condition has a ways to go for therapeutic development, but I was encouraged and informed by the experiences, insights, and ideas from others.”
“At such a large meeting it was so helpful to have this event for PAGs to connect with one another and key people in the field.”
“The PAG focus at ASGCT generally is fantastic.”
“I enjoyed this very much. I met several new connections."
Other offerings at the Annual Meeting for the Patient Advocate attendee include:
- Sessions planned by the Patient Outreach Committee, including a half-day workshop: Why do rare disease clinical trials often miss the mark? Best practices and approaches to optimize design of clinical trials and a symposium on Research readiness for rare diseases.
- A curated agenda in the Patient Advocates Guide to the Meeting.
- New this year, the abstract submission process encouraged researchers to submit a Plain Language Summary with their scientific abstract – see an ASGCT-curated Top 25, along with the 800+ others that were submitted and can be viewed alongside the abstracts.
ASGCT continues to prioritize expanding our reach in the patient advocate community, and offers opportunities to connect with us at the Annual Meeting and year-round! Thank you to those who joined us this year, whether in-person or virtually!
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