This session invites you into that lived experience and asks a simple but urgent question: why does timely diagnosis remain so difficult, and how can we change it? Drawing on real patient stories and insights from the Systemic Mastocytosis community, we will explore how misdiagnosis, fragmented care, and limited awareness across specialties delay access to the right treatment at the right time.
Patients, clinicians, and innovators will come together to examine where the system breaks down, and where it can work better. The discussion will focus on clinical pattern recognition, coordination across specialties, and the importance of strong, connected networks of care.
Add to Calendar2026-02-27 13:30:002026-02-27 15:00:00Living with the Unknown – Alleviating Diagnostic Odysseys in Rare Diseases
"The hardest part wasn't the diagnosis. It was the years without one."
Friday, February 27
5:30-7:00 a.m. Pacific Time / 8:30-10:00 a.m. Eastern Time (2:30-4:00 p.m. UTC)
Virtual
Learn more and register
This session invites you into that lived experience and asks a simple but urgent question: why does timely diagnosis remain so difficult, and how can we change it? Drawing on real patient stories and insights from the Systemic Mastocytosis community, we will explore how misdiagnosis, fragmented care, and limited awareness across specialties delay access to the right treatment at the right time.
Patients, clinicians, and innovators will come together to examine where the system breaks down, and where it can work better. The discussion will focus on clinical pattern recognition, coordination across specialties, and the importance of strong, connected networks of care.
Coordinating Center for Diagnostic ExcellenceAmerica/Los_Angelespublic
