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From Patient to Pioneer: Sharron S. Rouse on Advocacy, APOL1 Awareness, and Community Impact
In this Rare360 discussion, Rouse shares insights on advocacy, genetics, trust in healthcare, and the future of APOL1 awareness.
The Rare360 Editorial Team
Jul 75 min read
Racing the Clock: When the Genetic Carrier Seeks to Become the Architect of the Cure
In rare disease, urgency is often discussed in abstract terms — pipeline acceleration, regulatory timelines, translational gaps. But for some, urgency has a date attached to it.
Yentli E. Soto Albrecht, PhD, is an MD-PhD student at the University of Pennsylvania whose life and work converged in August 2024 when her father — a 42-year educator in Lancaster, Pennsylvania — died from rapidly progressive ALS caused by the C9orf72 genetic mutation. He died fourteen months from hi
The Rare360 Editorial Team
Feb 2611 min read
Navigating the Mental Health Coverage Gap in the Rare Disease Community
Rare disease patients face unique mental health challenges, yet many struggle to access care due to insurance coverage barriers.
The Rare360 Editorial Team
Oct 15, 20246 min read
The Rise of Medical Students with Disabilities: A Promising Trend for Rare Disease and Chronic Illness Communities
The rise of medical students with disabilities is a promising shift, bringing hope for more inclusive care fo rare disease community.
The Rare360 Editorial Team
Sep 13, 20243 min read
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