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.
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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.
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.
Be part of the future!
If you or someone you know is affected by a v-ATPase disorder, please consider participating in research studies. By joining you contribute to medical research and take hope into action!
In our Second Newsletter, The v-ATPase Voice, Vol. 2 (May 2024), Drs. Ricardo Morcos and Angel Aledo-Serrano from the Instituto de Neurociencias Synaptia, Madrid, explore the genetic intricacies of epilepsy.
"MD Talks" is a special section where we invite physicians to share insights directly with our community, offering expert perspectives and valuable knowledge.
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.
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.
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.