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    • Home
    • About Us
    • Get Involved
    • Research
      • OUR BOARD
      • DCP RESULTS
      • MD TALKS
      • LITERATURE
    • Family Resources
      • PATIENT REGISTRY
      • STUDIES
      • WHAT IS V-ATPASE
      • HUMAN DISEASES
      • GENETIC TESTING
      • OUR WARRIORS
      • TELL YOUR STORY
      • NEWSLETTER
      • FACEBOOK GROUP
    • Contact
Hi 👋⁠
  • Home
  • About Us
  • Get Involved
  • Research
    • OUR BOARD
    • DCP RESULTS
    • MD TALKS
    • LITERATURE
  • Family Resources
    • PATIENT REGISTRY
    • STUDIES
    • WHAT IS V-ATPASE
    • HUMAN DISEASES
    • GENETIC TESTING
    • OUR WARRIORS
    • TELL YOUR STORY
    • NEWSLETTER
    • FACEBOOK GROUP
  • Contact

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Why we exist:

Build a Supportive Community to share experiences, resources, and invaluable emotional support.

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!

We actively engage with medical professionals, researchers, and policymakers to raise awareness.

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.

Develop Effective Treatments: Central to our mission is driving scientific progress on v-ATPase.

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. 

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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!

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. 

LEARN MORE

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. 

Contact us

Participate in Research

Calling all parents with kids with variants in the ATP6V0A1 gene

Navigating Epilepsy (MD Article)

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!

let's go!

Navigating Epilepsy (MD Article)

Navigating Epilepsy (MD Article)

Navigating Epilepsy (MD Article)

 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. 


REad the article

Our Warriors

Navigating Epilepsy (MD Article)

Our Warriors

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.

tell your story

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Navigating Epilepsy (MD Article)

Our Warriors

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.

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We are rare.

So everyone counts.

We need everyone to fill up our Data Collection Program (Patient Registry) to help us charaterize each gene.

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Join our Registry

 

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Your involvement is crucial in finding a cure. Together we can save lives.

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