iiinova — where your digital self keeps evolving

v-ATPase Alliance @vatpasealliance.org · 30/07/2025

On this #WarriorWednesday we pause to honor four extraordinary children whose lives continue to guide and inspire our mission: Avril, Hawke, Remington and Izabella. 🕊️ Forever warriors. Forever remembered. Forever a part of the Alliance 🤍

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v-ATPase Alliance @vatpasealliance.org · 29/07/2025

We are halfway there, but need your help! We're running the #20for20 Campaign, aiming for 20 biosample collections. You might wonder: why aren't 10 enough? Why is 20 the golden number? Let us shed some light on that! Donate: donorbox.org/20-for-20-78...

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v-ATPase Alliance @vatpasealliance.org · 24/07/2025

Today is v-ATpase Awareness Day! v-ATPase it matters! Kids like Lana matter! Thank you for helping raising Awareness with your own voice in English and Russian. What a mighty warrior! Comment, Share and Care. Get involved: vatpasealliance.org/get-involved

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v-ATPase Alliance @vatpasealliance.org · 23/07/2025

Today is v-ATPase Awareness Day! We're highlighting the 23 genes of this vital pump. Its malfunction causes severe multi-system disorders & DEEs in kids, but studying it also offers key insights into fighting cancer, neurodegeneration, & promoting healthy aging. v-ATPase: it matters! #AwarenessDay

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v-ATPase Alliance @vatpasealliance.org · 13/06/2025

New Series coming up later this month: "Roadmap to a Cure: Navigating the Path for v-ATPase-related conditions" and many other rare genetic disorders! #vATPaseAlliance #RoadmapToACure #RareDiseaseResearch #HopeForACure #BreakthroughsAhead #PatientAdvocacy

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v-ATPase Alliance @vatpasealliance.org · 06/06/2025

There's More to the Story is an Educational Program from v-ATPase Alliance a 501(C)(3) Nonprofit commited to bring positive change to those living with ultra rare diseases. Learn more and support our vision at www.vatpasealliance.org

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v-ATPase Alliance @vatpasealliance.org · 06/06/2025

Community Update! We are thrilled to extend a warm welcome to our first known v-ATPase family from Serbia! Help us reach more families and potential partners by sharing this post #vATPaseAlliance #RareDisease #CommunityStrong #Serbia #GlobalReach #WelcomeHome #CareAboutRare

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v-ATPase Alliance @vatpasealliance.org · 03/06/2025

Endosome map reveals v-ATPase IS the ultimate connector! The biological pathways or functions these proteins influence may ultimately have a more significant impact! Article here: www.nature.com/articles/s41...

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v-ATPase Alliance @vatpasealliance.org · 16/04/2025

Understanding the genetic complexity of v-ATPase DEE is crucial for diagnosis and treatment. See the gene comparison table: ATP6V0A1, ATP6V1A, ATP6V0C. #vATPase #Neurology #RareDisease #Diagnosis #GetToKnowMore

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v-ATPase Alliance @vatpasealliance.org · 14/04/2025

Disease detectives, assemble! 🔍 The new 💚 "Get to know more about v-ATPase" campaign aims to drive awareness of v-ATPase-related diseases and emphasize that gene testing is essential for accurate diagnosis and effective treatment of v-ATPase-related disorders. Stay tuned!

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v-ATPase Alliance @vatpasealliance.org · 26/02/2025

Tomorrow, Feb 27th, we will be at the #Texas Children's Hospital from 9am-4pm CST Stop by, say hello, and help make a difference! 🙌 #RareDiseaseDay2025 event with #NORD / Center of Excellence at Baylor College of Medicine (BCM) / Baylor St. Luke’s Medical Center (BSLMC) in the Texas Medical Center.

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v-ATPase Alliance @vatpasealliance.org · 24/02/2025

Have you ever found yourself staring at a Google search bar, the weight of the world pressing down on your shoulders, desperately trying to decipher how to find the right support for your child? Try www.librarey.com A collaborative resource for rare diseases. Find support and share knowledge.

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v-ATPase Alliance @vatpasealliance.org · 06/02/2025

The RARE Advocacy Exchange kicks off on March 10th at 1 PM EST. A year long virtual patient summit! 🌟 We've already signed up; will you join us? 📌 Register here: globalgenes.org/rare-advocac...

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v-ATPase Alliance @vatpasealliance.org · 04/02/2025

Punxsutawney Phil predicts six more weeks of winter ☃️🧣🧤 We’ve got you covered! With 2 NEW hoodie options to Care About RARE! Orders close in 3 days: Friday, February 7th! www.customink.com/fundraising/... #GroundhogDay #RareDiseaseAwareness #RareDiseaseDay

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v-ATPase Alliance @vatpasealliance.org · 01/02/2025

It’s February! 🗓️ You can kick off Rare Disease Day month by framing your profile picture with this custom badge showing your support for the v-ATPase Alliance. Help us raise awareness for rare diseases with this one simple action! ✅ Join Us!! www.canva.com/design/DAGdY...

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v-ATPase Alliance @vatpasealliance.org · 31/01/2025

Show your stripes & support v-ATPase research! 🦓 Shirts are available for purchase (proceeds benefit research). Rocking last year's shirt? Donate to v-ATPase Alliance while you #WearYourStripes on Feb 28th! Every bit helps advance research & find treatments. #RareDiseaseDay #CareAboutRare

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v-ATPase Alliance @vatpasealliance.org · 31/01/2025

Mark your calendars! 🗓️📣 Rare Disease Awareness Month starts tomorrow, culminating in #RareDiseaseDay on Feb 28th! Join us & 300 million others impacted by rare diseases. We'll share ways to spread awareness, show support, & take action for v-ATPase research & treatments. #CareAboutRare ❤️💛💚💙🔬🤝

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