The EHE Foundation

ASK THE EXPERT is back, and there is still plenty of time to submit questions to our #EHE expert panel for #EHE360!? ? The 2025 EHE 360 Global Patient Conference is April 10th-11th. Once again, we are excited to facilitate the "Ask the Expert" panel discussion, where leading medical experts answer your questions about #EHE. We encourage you to submit questions that could be helpful to our community. The panel cannot answer questions about an individual patient's diagnosis or treatment. Submit your questions as you register: ?? https://lnkd.in/ebeTX7Jg Or, submit them at the link below: ?? https://lnkd.in/ehHPaT_r 2025 Ask the Expert Panel ?? Tom Wei-Wu Chen, MD, PhD National Taiwan University Hospital ?? Gina D’Amato, MD University of Miami ?? Sandra D’Angelo, MD Memorial Sloan Kettering Cancer Center ?? Abha Gupta, MD Princess Margaret Cancer Centre

?? Register by Monday, March 17th ?? to receive your T-shirt in early April and save $5 on registration. Register here ?? https://lnkd.in/gCntN-p8 Here's what you need to know: ???? There is no set event date!* It’s an event where everyone can participate in their own way, united by a common goal, no matter where they are. *If you are registering for a team holding an in-person event, contact your Team Captain for the date, time, and location of the event. If you're not sure, email [email protected] for help! Additional Information: ?? A second wave of registration is open through April 30th with T-shirts shipping in early May. ?? T-shirts and giveaways are not guaranteed for registrations made after May 1st. ?? Registration closes on June 15th.

?? Newly diagnosed with #EHE or seeking a second opinion? Finding a specialist with experience in this ultra-rare cancer is crucial. Use the EHE Provider Directory to connect with doctors who understand EHE and its complexities. These specialists, often found at major academic medical centers, are typically #sarcoma experts working in multi-disciplinary teams—including medical oncologists, pathologists, interventional radiologists, and surgical oncologists. https://lnkd.in/gpvta_Hs #epithelioidhemangioendothelioma #ultrararesarcoma #EHEFoundation #theEHEFoundation #EHEcancer #justlive #raredisease #EHEresearch #EHEawareness

?? The EHE 360 Global Patient Conference is happening Thursday, April 10th & Friday, April 11th, from 10 am - 1 pm (ET) each day. This live VIRTUAL event empowers patients and caregivers with the latest clinical and research updates on #EHE from the world’s leading experts. Don’t miss this opportunity to connect, explore, and learn about the future of #EHE research and care! Registration is free and required. ?? https://lnkd.in/ebeTX7Jg #EHE360 #EHEresearch #epithelioidhemangioendothelioma #EHEFoundation #theEHEFoundation #EHEcancer #justlive

Register for the EHE Fun Run & Walk by Monday, March 17th ?? to receive your Just Live T-shirt in early April—just in time to spread #EHEawareness all month long! ?? https://lnkd.in/gCntN-p8 Miss the deadline? No worries! Registration stays open through April 30, 2025, with the next batch of shirts shipping in early May ??. #justlive #EHE #EHEfunrunandwalk #AprilisEHEawarenessmonth

If you are considering a clinical trial visit https://lnkd.in/e5EvUD7w for available trials including people with EHE. These include several US and global opportunities. ?? When considering a trial, consult your physician and the trial team to address any questions. ?? For more details, email [email protected].

?? EHE 360 Connect: "Results of a Phase 2 Trial of Trametinib in Advanced EHE" Recording Available! Dr. Schuetze provided an overview of the rationale for treatment of EHE with trametinib, an oral inhibitor of the MEK kinase; the trial design of 10015/SARC033; and the results of the primary and secondary study endpoints. The presentation included an update on exploratory investigation of blood-based biomarkers including hemoglobin, C-reactive protein, and connective tissue growth factor as prognostic and predictive factors in the patients with EHE who participated in the clinical trial. Q&A also included. Watch: https://lnkd.in/eNgfSbFZ #EHE360connect #EHE360 #EHE #epithelioidhemangioendothelioma #ultrararesarcoma #trametinib #EHEFoundation #theEHEFoundation #EHEcancer #justlive #sarcoma #raredisease #patientpoweredresearch #EHEresearch

???? It's #RareDiseaseDay! Meet someone rare. Diagnosed with epithelioid hemangioendothelioma (EHE) in December 2023 after nearly a year of pain, Danielle has been through surgery and radiation. Despite it all, she embraces life and her strong faith. Watch her full story and meet other people living with EHE on our website: https://lnkd.in/edmZ9wW6 Share this post to raise awareness of EHE, sarcoma, and rare diseases. #RareDiseaseDay #EHEAwareness #UnitedForRare #showyourcolors #shareyourcolors

? #RareDiseaseDay is Tomorrow! ? One of the most common questions about EHE is: "What is the EHE awareness ribbon?" Many people recognize yellow as the color for sarcoma and zebra stripes for rare diseases, but what about EHE? Since EHE is a vascular sarcoma, we use a red and yellow ribbon to represent it. ???? No matter which ribbon you wear, we are grateful for your support in raising awareness for EHE, sarcoma, and the rare disease community. Together, we make a difference! #RareDiseaseDay #EHEAwareness #UnitedForRare #showyourcolors #shareyourcolors

We stand with the American Association for Cancer Research (AACR) in emphasizing the importance of NIH funding for medical research. Lack of funding hinders #sarcoma research, including the investigation and development of new therapies for #EHE. Take action today: ??? Use AACR’s Legislative Action Center to quickly contact your elected officials to urge them to protect NIH funding and ensure stability for the scientific workforce. ??? Share this post. It takes all of us to create change. Read the AACR Statement and Call to Action Regarding the Administration’s Recent Actions Affecting NIH and the American People and take action today. ?? https://lnkd.in/eBYKwADA