We aim to connect, share and learn with other v-ATPase families so we can collectively make a difference!
Much is still to be discovered and we aim to foster a collaborative environment that connects patients, researchers, and healthcare professionals for more effective scientific advances and therapeutic development.
Children with rare diseases are easily forgotten but deserve to have a voice.
Help us expand!
Connect with us on Social Media
and spread the word!
RSVP to secure your spot!
Get ready for an exciting lineup of upcoming events! 🎉
Stay tuned as we plan more events to offer great opportunities to connect with our community, learn something new, and have fun.
Want to get involved? Reach out to us through our contact form.
We'd love to hear from you!
We're studying ATP6V0A1 variants.
If you or someone you know is affected, please contact us. We're working with leading experts and need your data to help develop new treatments.
Save the Date: September 18th, 9am EST
We will be hosting a study opportunity for patients with ATP6V1A variants.
Check our Calendar to learn more
Be part of the future!
Fill out your Data Collection Program and be part of a community that supports and empowers patients. Joining you contribute to medical research and take hope into action!
Each story is powerful.
As a Warrior, they've overcome challenges, faced adversity, and emerged stronger. Each journey is inspiring and can help others find the courage to persevere.
Let's share our stories together. By sharing your experiences, you're not just telling your tale; you're helping to create a community of support and inspiration.
Your contribution can make a big difference in the lives of those we serve. Donate today to help support our mission of empowering communities.
We are rare.
So everyone counts.
We need everyone to fill up our Data Collection Program (Patient Registry) to help us charaterize each gene.
#BeCounted
Be part of something bigger.
Your involvement is crucial in finding a cure. Together we can save lives.
Find out how
#2024YearOfAction
We are here for you.
We have a private Facebook Group to support families and help you share your story and connect with others.
Together we are stronger!
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We are a REGISTERED 501(C)(3) NONPROFIT organization.