In today’s episode, we asked Ana Rita Moreira, How to unlock a rare community? A mother turned global advocate, Ana Rita talks about how her son’s ultra-rare diagnosis sparked a powerful mission.

She didn’t wait. She acted. She went from diagnosis shock to launching a research-focused alliance.

What began as a personal struggle evolved into a mission to support others facing similar challenges. Through advocacy, community building, and raising awareness, Ana Rita and the V-ATPase Alliance are helping reshape the future for families affected by this rare disease, turning pain into purpose and isolation into action.

An inspiring journey of resilience and impact, where we reflect on the role of patient groups and also why building trust takes time.

Rare Mind Talks podcast explores how AI, data, and innovation 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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