Why we exist:
Support each other on this ultra-rare journey
Since you are here we invite you to share our mission!
Support each other on this ultra-rare journey
We aim to connect, share and learn with other v-ATPase families so we can collectively make a difference!
Knowledge is power
Since you are here we invite you to share our mission!
Support each other on this ultra-rare journey
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.
Since you are here we invite you to share our mission!
Since you are here we invite you to share our mission!
Since you are here we invite you to share our mission!
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!
Latest news & Updates
Calling all parents with kids with variants in the ATP6V0A1 gene
Calling all parents with kids with variants in the ATP6V0A1 gene
Calling all parents with kids with variants in the ATP6V0A1 gene
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.
Study Opportunity for ATP6V1A families
Calling all parents with kids with variants in the ATP6V0A1 gene
Calling all parents with kids with variants in the ATP6V0A1 gene
Are you a patient with an ATP6V1A variant? We're starting a new study!
Contact us to learn more about eligibility and enrollment. You should inform your healthcare provider about this opportunity.
Data Collection Program
Calling all parents with kids with variants in the ATP6V0A1 gene
Data Collection Program
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!
Our Warriors
Our Warriors
Data Collection Program
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.
Donate
Our Warriors
Donate
Your contribution can make a big difference in the lives of those we serve.
Your monthly donation can make a tangible difference in the lives of those we serve. By choosing a recurring donation, you'll ensure a steady stream of support for our critical work.
Donate today to join us in making a lasting impact.