PTEN Foundation US
@PTENFoundation
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PTEN is a tumor suppressor gene. When mutated at birth a patient is at higher risk for many #cancers and #autism. our mission: treatments for PHTS, patient 1st
Global
Joined December 2013
Today is Rare Disease Day, our community is celebrating with hopeful anticipation for better care and treatments. #pten #RareDiseaseDay2025
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RT @rarediseasesnet: October 23 is PTEN Hamartoma Tumor Syndrome Awareness Day! 🎉.➡️ Learn more about PTEN: ➡️ Chec….
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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
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Attending #nordsummit! This is one of our favorite events to learn, connect, and grow! Grateful for the team @RareDiseases! We wouldn’t miss this even though we are hosting our summit in Huntsville this Wednesday!! #pten
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We lost our Champion this week. @CharisEngMDPhD 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. @ClevelandClinic
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Additionally, @Delta changed my connecting flight without my permission and said there is no other solution without a cost to me.
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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
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We are excited to attend ASCO Breakthrough 2024 to present Terralyn Schmidt’s important work from our patient registry. #ascobt24 #hereditarycancer #pten #phts
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RT @ASPS_News: 🤔 Did you know breast implants aren't a get-it-and-forget-it medical device? They need ongoing monitoring and typically need….
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I need to speak to someone with @FlyFrontier. 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 @USDOT.
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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
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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
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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
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RT @PBenusiglio: Did you know that #PTEN PGV carriers were at risk of dural arterioveinous fistulas? With potentially devastating consequen….
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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
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