Donate HERE and directly support v-ATPase medical research Click here!

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
  • More
    • 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

ABOUT US

V-ATPASE ALLIANCE - ADVOCATING FOR RARE DISEASE HOPE

Welcome to v-ATPase Alliance, a passionate and dedicated community of parents, caregivers, scientists, and advocates united by a common mission - to improve the lives of individuals affected by rare genetic mutations in v-ATPase. Our story is one of resilience, hope, and unwavering commitment to bringing positive change to those living with these ultra rare diseases.

Our Journey

Our journey began with the heart-wrenching realization that our children were among the ultra-rare group of patients facing the neurodevelopmental and epileptic challenges of genetic variations in the v-ATPase complex. Faced with the frustration of having many questions but very few answers, our collective determination led us on the path towards empowering our community through support, research, and the creation of novel treatments.

Our Mission

At v-ATPase Alliance, our mission is threefold:

  1. Build a Supportive Community: We strive to be a beacon of support for patients, families, and caregivers navigating the complexities of living with genetic mutations in the v-ATPase. We provide a platform for sharing experiences, resources, and invaluable emotional support.
  2. Advance Scientific Research: We work for the advancement of research and understanding the underlying mechanisms of these mutations, leading to improved care for individuals affected by these rare diseases. We actively engage with medical professionals, researchers, and policymakers to raise awareness and promote positive change and seek partnerships with organizations and institutions that share similar missions to amplify the impact and reach of v-ATPase research. 
  3. Develop Effective Treatments: Central to our mission is driving scientific progress. We collaborate with leading researchers and institutions to fund groundbreaking research initiatives focused on developing potential treatment options. We foster collaboration among researchers, drug developers, and regulators to accelerate progress for v-ATPase diseases and generate critical tools and resources to help therapeutic development (e.g., natural history study, biomarkers, etc.).

Our Community

v-ATPase Alliance is built upon the collective strength of our community. We understand the unique challenges that come with rare diseases and the importance of finding solace in a network of like-minded individuals. Together, we form an unbreakable bond that inspires us to keep pushing the boundaries of what is possible for the betterment our children.

Join Us in Our Quest for Hope

Whether you are a caregiver, scientist, supportive relative, friend or rare disease advocate, we invite you to join us on this remarkable journey. Together, we can work to improve the lives of individuals and their families affected by v-ATPase disorders. 

Together, we can bring hope to those who need it most.

We have a private Facebook Group to support families.

We welcome families and the research community to come together to share and connect.

Connect with us

Our Partners

REN Rare Epilepsy Network Partner
Global Genes Allies in Rare Disease
RARE-x A Research Program of Global Genes - our Data Collection Program Partner
Epilepsies Action Network, a coalition that works to improve the lives of people with epilepsy.
25 Million Wishes is a rare disease community movement to help share and give a voice to the 25 mill
Citizen Health, a movement of patients and families using their health data to improve care and driv
CombinedBrain, The Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders
You buy with 20% off. We get 15%!

Minted. Fundraising Program

Shop stationary, gifts, art and more with our code:  FUNDRAISEVATPASE to receive 20% off your purchase and Minted will donate 15% to the v-ATPase Alliance! Talk about a win-win! 


You can use our code all year long.

CODE: FUNDRAISEVATPASE

Buy Now

We take Transparency Serious

We take Transparency Serious

 We'll continue working tirelessly to serve our community and advance v-ATPase research.


Your support is vital to keep us going. Thank you

Support our vital work:

We take Transparency Serious

Donate to v-ATPase Alliance to fund research, treatments, and community support. 

Donate

Copyright © 2025 v-ATPase Alliance - All rights reserved.


We are a REGISTERED 501(C)(3) NONPROFIT organization.

  • Home
  • Privacy Policy

Powered by

This website uses cookies.

We use cookies to analyze website traffic and optimize your website experience. By accepting our use of cookies, your data will be aggregated with all other user data.

DeclineAccept