The v-ATPase Voice - the official v-ATPase Alliance Newsletter - is Out, check the latest content and share with your contacts. Help us spread awareness. mailchi.mp/8ce5f1be5f59... Not subscribed? Subscribe here: eepurl.com/iHW3S-/

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 🤍

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...

23 #vATPase #Facts!

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

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

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

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

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

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...

@Ana Rita Moreira of the REN member @vatpasealliance.org shared her moving advocacy story, "Don't Let the Light Go Out," with the @Epilepsy Foundation's Foundation Quarterly Spring 2025. The energy and determination of their community is contagious. www.flipsnack.com/epilepsyfoun...

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

v-ATPase is a multi-subunit enzyme complex, a proton pump, that is expressed in various cellular membranes throughout the body, including lysosomes, endosomes, and plasma membranes #GetToKnowMore

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!

On this Rare Disease Day we share the story of Charlotte's epilepsy journey with v-ATPase. To learn more about Charlotte’s diagnosis, please visit www.vatpasealliance.org @vatpasealliance.org

Let's all come together on this #RareDiseaseDay us06web.zoom.us/meeting/regi...

⚠️ SIGN TODAY!!! Rare Disease community petition for steady and robust federal agency leadership, Federal Biomedical Research Funding, and Public Health Agency Support! It will be sent to members of Congress tomorrow #RareDiseaseDay! everylifefoundation.org/national-rar... @everylifeorg.bsky.social

Tomorrow, February 28th, we are hosting a Global Rare Disease Day on Zoom. Sign up here, don't miss the fun! us06web.zoom.us/meeting/regi...

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.

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.

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...

Interesting paper that provides a good overview of the key factors, beyond cost, that funders should consider when developing their Programs and Policies. #OpenScience www.biorxiv.org/content/10.1...

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

Support v-ATPase research! Buy a "Care About Rare" shirt (proceeds benefit research) or donate while you wear your stripes on Feb 28th. Every contribution helps advance treatments. 🦓🧬 www.customink.com/fundraising/care-about-rare2025 #vatpase #careaboutrare #showyourstripes #rarediseasemonth

Spinning like crazy 😝

Visualizing Single V-ATPase Rotation Using Janus Nanoparticles pubs.acs.org/doi/full/10....

Thank you, David Goodsell, for 300 editions of "Molecule of the Month" @rcsbpdb.bsky.social !! March 2018 was a great month for our lab when David highlighted our V-ATPase, ATP synthase, and V/A-ATPase structures pdb101.rcsb.org/motm/219

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...

Grab your Care About Rare tshirt here: www.customink.com/fundraising/... #vATPase #CareAboutRare #WearYourStripes #RareDiseaseMonth #RareDiseaseAwareness #RareDiseaseDay

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

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 ❤️💛💚💙🔬🤝

This are the genes that have a direct link with human diseases ATP6V0A1 ATP6V0A2 ATP6V0A3 ATP6V0A4 ATP6V0C ATP6V0D2 ATP6V1A ATP6V1B1 ATP6V1B2 ATP6V1C2 ATP6V1E1 ATP6V1H Know more here: vatpasealliance.org/human-diseases

We are happy that you are here and thankful for any effort you make to raise awareness for genetic disorders related with v-ATPase. ⁠ #RareDisease #Pediatric #RareDiseaseAwareness

Hello, everyone! We are @vatpasealliance.org a nonprofit to help families affected by v-ATPase genetic disorders #RareDisease