In “Between Care and Cure, Building What Doesn’t Exist Yet”, Erika Stariha shares her journey from undiagnosed parent to European foundation founder. Her son’s eight-year wait for a SATB2 diagnosis shaped everything that followed. Consequently, she built a foundation focused on systems, not just symptoms.

Erika discusses the real barriers to advocacy engagement: language, time and emotional load. However, she also reveals what motivates over sixty clinicians to volunteer their expertise. Meanwhile, she explains why clear priorities matter more than chasing every opportunity.

The conversation moves through leadership, collaboration and decision making under scarce resources. Ultimately, Erika reminds us that small progress is still progress. It offers honest insight for leaders navigating fragmented data and fragmented systems alike.

Rare Mind Talks podcast explores how AI, data, and Education are transforming healthcare for rare diseases. Hosted by André Correia, a digital transformation leader and rare disease advocate, this Podcast aims to simplify complex topics, inspire research, and connect experts to improve lives.

Learn more at https://www.theraremind.com or
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