In this episode of Rare Awareness Radio, Richard Juknavorian sits down with Ana Rita Moreira Moreira, Founder, Co-Founder, and President of the v-ATPase Alliance — a volunteer-led global advocacy and research movement she built alongside neuroscientist Luis Oliveira and advocate Kristin Anderson.

Ana Rita shares the story of their son Danny, one of only 27 children in the world living with an ultra-rare genetic mutation in the ATP6V0C gene — a diagnosis that came with no name, no roadmap, and almost no answers. What Ana Rita did next changed everything.

With a rare blend of economics, brand communications, and founder intuition, she helped transform isolation into organized action: launching a multilingual website in 100+ languages, mobilizing families across continents, collecting patient-reported outcomes, securing EMRs through AI-enabled platforms like Citizen, and building a centralized bio-repository to de-risk and accelerate research investment.

This conversation captures the heart of the rare-disease community — where connection beats competition, small victories become shared milestones, and hope turns into momentum.

Call to Action:
If you’re a parent, advocate, researcher, clinician, or volunteer with expertise in legal, accounting, research, marketing, operations, or tech — your contribution matters. Even a few hours can help power the impossible.

Find the Alliance:
v-ATPase Alliance Website – https://vatpasealliance.org/
v-ATPase Alliance on Social Media – https://www.instagram.com/vatpasealliance

Hosted by: Richard Juknavorian
Podcast produced in partnership with: Principled Research Resources

Let’s amplify. Let’s accelerate. Let’s support every family where they are — and move rare knowledge forward, faster.