Welcome

"I thoroughly enjoyed the recent PCORI listening session, which my son and I had the privilege to attend together. As a long-term patient, I found the session to be an invaluable opportunity for reflection and discussion. It was especially moving for me to witness my son, who is a newly diagnosed patient, discovering that he is not alone in his journey. The sense of community that developed as we shared our experiences was refreshing and uplifting. These sessions empower patients of all backgrounds to engage in their healthcare journeys with renewed hope and understanding. Thank you for facilitating such a powerful and enlightening experience for both of us!"

Being a part of this IBD listening session meant more than I expected. As a care partner to my husband who’s lived with Crohn’s for over a decade, I often feel like our voices are unheard. This session gave us space to not only speak but to feel genuinely listened to. Hearing from other care partners helped validate my own experiences — the late-night ER visits, the emotional toll, the small victories. I walked away feeling more connected, informed, and hopeful that change is coming in how the IBD community is supported. Thank you for including us — we’re part of the journey too."

"Living with ulcerative colitis can be so isolating, but this listening session reminded me that I’m not alone. For once, I didn’t have to explain every little thing — the fatigue, the fear, the frustration — because everyone in the room just got it. The empathy, the openness, and the genuine interest from the organizers made me feel seen. It wasn’t just a checkbox event — they really wanted to hear us. I left feeling empowered and more hopeful that real progress is being made in how IBD is understood and addressed."