Rare Disease Day 2026: The Hidden Burden of Rare Cancers With Claire Saxton

In honor of Rare Disease Day on February 28, Oncology Data Advisor spoke with Claire Saxton, MBA, Executive Vice President for Insights and Impact at Support Community (CSC). In this interview, Ms. Saxton explores the hidden psychosocial burden carried by patients with rare cancers, the diagnostic challenges of "zebra" diseases like neuroendocrine tumors (NETs), and the crucial role of multidisciplinary teams in supporting patients through active surveillance and beyond. Ms. Saxton discusses how precision medicine is redefining "rare" as common cancers are divided into small molecular subsets, why patients with ultra-rare malignancies often feel invisible, and how delayed or missed diagnoses fuel isolation, anxiety, and depression. She also explains why CSC prefers the term "active surveillance" over "watch and wait," and offers practical strategies (lifestyle changes, mindfulness, and peer support) to help patients cope when immediate treatment is not indicated. Finally, she highlights the importance of connecting patients and caregivers with advocacy organizations and support communities, not only to combat isolation but also to empower them as storytellers and policy advocates who can drive meaningful change in research and health care. For more information about Cancer Support Community, visit https://www.cancersupportcommunity.org/ or call the helpline at 888-793-9355.