Today is PTEN awareness day! Speak up and shine a light on PTEN-your voice matters. Tag us @ptenfoundation #pten
Today is Rare Cancer Day. We are all faced with a rare syndrome that causes common cancers. PTEN may be rare, but its impact isn't; it increases risk for cancers that can affect thousands.
Together, we're building awareness, advancing research, and proving that even the rarest voices can create the loudest change. #pten @followers #phts @RareDiseases #raredisease #cancer
Rare syndromes. Common cancers. Uncommon courage.
The PTEN Hamartoma Tumor Syndrome Foundation Announces Major Research Grant Opportunity in Memory of Dr. Charis Eng! The grant offer is up to $135,000, Available over Three Years, to Support Critical PTEN Research. #pten #ptenresearch #hereditarycancer #autism #genetics #grantopportunity #grants #research
einpresswire.com/article/843…
Today is Rare Disease Day, our community is celebrating with hopeful anticipation for better care and treatments. #pten #RareDiseaseDay2025
PTEN Foundation US retweeted
October 23 is PTEN Hamartoma Tumor Syndrome Awareness Day! 🎉
➡️ Learn more about PTEN: dsc.rarediseasesnetwork.org/…
➡️ Check out our PTEN research: dsc.rarediseasesnetwork.org
➡️ Get involved with our patient advocacy partner @PTENFoundation: ptenfoundation.org
#PTENAwarenessDay2024
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 remarkable life of Dr. Charis Eng.
Please share, reshare, tell your story, and tag @ptenfoundation on all social media. Let's use our collective voice to let the world know we are here and ready for treatments! We want a hopeful future for future generations; together, we will make that a reality!
We love this awesome photo put together by the Eng Lab members. Let's show them our love and share this picture worldwide!
#englab #ptenawarenessday2024 #pten #phts #raredisease #hereditarycancer #autism #hope
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
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
Additionally, @Delta changed my connecting flight without my permission and said there is no other solution without a cost to me.
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 are excited to attend ASCO Breakthrough 2024 to present Terralyn Schmidt’s important work from our patient registry. #ascobt24 #hereditarycancer #pten #phts
PTEN Foundation US retweeted
🤔 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 Drs. Karen Horton, Lara Devgan and Kelly Killeen: bit.ly/3A4NhXC
#BreastImplants #BreastAugmentation #BreastSurgery #BreastImplantReplacement #ASPS #PlasticSurgery
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
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 our registry was accepted to ASCO Breakthrough.
2) We hosted 8 International Conferences
3) Multiple Clinical Trials
4) International care guidelines are in the works
5) Thousands provided for patient support
6) Our community now has a Center of Excellence program
And much more! We predict great things ahead! #ptengene #ptenhamartomatumorsyndrome
#phts #hereditarycancer #autism #vascularanomalies #hope #genetics #globalgenes
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 launching a new disease cost burden study to fight this battle alongside our families. We aim to understand the financial cost of living with PTEN Hamartoma Tumor Syndrome.
Patients can register at ptenregistry.org and complete the survey, which can be found in the survey section.
If you treat PTEN patients in the United States, please share about the study and help us understand the true cost of living with PTEN. Together, we can make a difference. Let's lighten the burden, one story at a time.
#pten #phts #raredisease #hereditarycancer #ptenresearch #ptenstudy #cowdensyndrome #PTEN #diseasebuden @ClevelandClinic @ChildrensPhila @BostonChildrens
