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2 weeks until we depart for Tanzania to climb Mount Kilimanjaro and honor our PTEN patient community. Do we have any PTEN friends in Tanzania or Moshi specifically? We would love to meet you! @Muhimbili National Hospital in Dar es Salaam. #pten #phts #raredisease

Did you know that #PTEN PGV carriers were at risk of dural arterioveinous fistulas? With potentially devastating consequences. Check out our latest publication: onlinelibrary.wiley.com/doi/epdf/10.11…. Consider brain MRI in all patients, with dedicated sequences. #PHTS #Cowden @AnnaGer28157298

We did it! On 2/29/24, International #RareDiseaseDay2024 we summited Mount Kilimanjaro at 19,341 feet to honor our #pten patients and families who need treatments. #climbforacause #kilimanjaro #pten #phts

Living with a rare disease isn't just emotionally draining; it can be financially devastating for families. Our foundation is dedicated to emotionally and financially supporting our PTEN Hamartoma Tumor Syndrome community. We understand our patients' struggles, and we're

This is our 10th year advocating for the PTEN community and our 3rd nomination for a Global Genes Champion of Hope award. We are humbled and honored by the amazing patient community we serve. We are also proud of our work. 1) Multiple publications and the first manuscript from

I need to speak to someone with Frontier Airlines. We just checked in for 3 traveling and were shocked to learn we were charged erroneously for 6 bags not 3 and overweight fees. We did not select this-all bags were proper weight U.S. Department of Transportation

🤔 Did you know breast implants aren't a get-it-and-forget-it medical device? They need ongoing monitoring and typically need replacing every 10 to 15 years. Click here to learn about the maintenance and replacement of breast implants with insights from ASPS Member Surgeons

We are excited to attend ASCO Breakthrough 2024 to present Terralyn Schmidt’s important work from our patient registry. #ascobt24 #hereditarycancer #pten #phts

Enjoying the kickoff of #ASCOBT24. Great opening talk. Data, Data, Data. Where do patient organization databases fit in this marathon to solutions? #pten #hereditarycancer #phts

We lost our Champion this week. Charis Eng, MD, PhD was a force and we are better for knowing her and promise to continue her legacy championing her beloved #PTEN cause. She would say “Onward and Upward!” So that is what we will do. Cleveland Clinic

Attending #nordsummit! This is one of our favorite events to learn, connect, and grow! Grateful for the team National Organization for Rare Disorders (NORD)! We wouldn’t miss this even though we are hosting our summit in Huntsville this Wednesday!! #pten

Today is our International Awareness Day, and we have much going on. Many of you will join us in person tonight, tomorrow, or online tomorrow for our 8th annual Symposium! The theme for this year's symposium is PTEN-Past, Present, and Future, and we are dedicating it to the

October 23 is PTEN Hamartoma Tumor Syndrome Awareness Day! 🎉 ➡️ Learn more about PTEN: dsc.rarediseasesnetwork.org/diseases-studi… ➡️ Check out our PTEN research: dsc.rarediseasesnetwork.org ➡️ Get involved with our patient advocacy partner PTEN Foundation US: ptenfoundation.org #PTENAwarenessDay2024

Do you remember when you joined X? I do! #MyXAnniversary

Need a Delta supervisor to help with a ticket problem.

PTEN Foundation US

Today is Rare Disease Day, our community is celebrating with hopeful anticipation for better care and treatments. #pten #RareDiseaseDay2025