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Expert Directory - Rare disease

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Autoimmune, Inflammation, patient advocacy, Rare disease, Registered Nurse

Alicia Truelove, MSN, RN, CV-BC, NPD-BC, is a nationally recognized nursing leader and rare disease advocate with nearly two decades of healthcare experience. Her expertise spans clinical education, nurse advocacy, and health equity—guided by both professional insight and personal experience as someone living with a rare disease.

Alicia serves as the California State Ambassador for the National Organization for Rare Disorders (NORD), where she champions inclusive healthcare policies and amplifies the voices of rare disease patients. She is also an active member of the Global Nursing Network for Rare and Undiagnosed Diseases, contributing to international efforts to equip nurses with tools to recognize and care for this often-overlooked population.

Known for bridging clinical care and policy, Alicia is a sought-after voice in the rare disease community, advocating for equitable access, timely diagnosis, and patient-centered care.

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