Patient advocate Sarah shared her lifelong experience with Neurofibromatosis type 1 (NF1) during a symposium in Birmingham, Alabama.

The event provides critical education for families navigating rare genetic conditions. By centering patient narratives, the symposium aims to reduce the isolation often felt by those managing chronic diseases and to offer practical guidance on long-term care.

The Neurofibromatosis & Schwannomatosis symposium was organized by the University of Alabama at Birmingham (UAB) and Children’s of Alabama (COA) [1]. The event took place in 2026 [1]. A featured interview with Sarah was hosted online by the Cleveland Clinic [2].

During the session, Sarah detailed her personal journey with NF1, a condition characterized by the growth of tumors on nerves. Her testimony focused on the realities of living with the disease and the importance of a multidisciplinary approach to healthcare. The symposium served as a platform to discuss how patients can better manage their symptoms and navigate the healthcare system.

Organizers said that the goal of the gathering was to ensure that patients and their families understand they are not alone in their journey [1, 2]. The collaboration between UAB and Children’s of Alabama highlights a regional effort to centralize expertise for these specific genetic disorders.

By integrating clinical knowledge with lived experience, the event sought to bridge the gap between medical treatment and the daily psychological challenges of the condition [2]. The program emphasized that education is a primary tool for improving the quality of life for those with neurofibromatosis and schwannomatosis.

“The symposium aims to show that patients are not alone in their journey.”

The integration of patient advocacy into clinical symposia reflects a broader shift toward patient-centered care in rare disease management. By pairing the academic resources of UAB and Children’s of Alabama with the public reach of the Cleveland Clinic, the event emphasizes that psychosocial support is as essential as medical intervention for chronic genetic conditions.