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Latest EHE News, Events & Research
Last week EHE Foundation Director of Research Denise Robinson, attended the Connective Tissue Oncology Society (CTOS) 2023 annual meeting in Dublin, Ireland. Every year, physicians, scientists, and advocates from around the world come together to advance patient care and increase knowledge in connective tissue tumors. EHE is one of over 100 subtypes of sarcoma, which […]
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Makenna is 14 years old and was diagnosed with EHE in June 2022. Makenna shared about her EHE diagnosis, “It has changed my life by showing me that I should be grateful for the things I have in my life. Examples of those would be my family, my friends, just being able to take a […]
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“The most difficult part of being diagnosed with EHE and living with it is how much it has changed me and my family. I have been so sick, I have lost so much weight, I barely have any energy, and I experience pain every day. My EHE is only in my liver. My family and […]
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Who or what inspires you most to keep fighting for a cure, and why? “My family, friends and support system. As well as all other patients who have been diagnosed with EHE and all those around them. Since EHE is a different path for each patient, and we still don’t understand how it happens/what causes […]
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Colin was diagnosed in 2021 with this one-in-a-million cancer. “EHE has changed my life because it has limited some of the sports and activities I can do. Before my diagnosis I had a lot of abdominal pain that impacted the sports I love, but with treatment I am able to keep playing baseball and basketball […]
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“EHE has changed every aspect of my life, and surprisingly, a lot of them, for the good. You think of a cancer diagnosis affecting the physical body, which it does. But for me, the most challenging part has been in my mind. Coming to terms with this new unwanted adjective/label, cancer patient, has been surreal. […]
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In September 2023, EHE Director of Research Denise Robinson met over three days in Milan, Italy, with patient advocates and researchers to discuss EHE research funded by this community. Exciting progress is happening in this multi-national collaborative research under the leadership of Dr. Silvia Stacchiotti and Dr. Nadia Zaffaroni (Istituto Nazionale Tumori IRCCS, Milan), and […]
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Investigator: John Lamar, PhD, Albany Medical College Dr. Lamar was awarded a 3-year grant by The EHE Foundation in 2022, that aims to identify FDA-approved drugs that inhibit EHE cell growth, and then test them in pre-clinical mouse models for the treatment of EHE. What does this mean for patients? This could mean a shorter […]
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Investigator: Ajaybabu Pobbati, PhD, Cleveland Clinic – Lerner Research Institute In 2022, The EHE Foundation funded a grant to Dr. Pobbati for research that looks at a library of current FDA-approved drugs that act as TAZ-CAMTA1 (TC) or TEAD inhibitors, for use in EHE. What does this mean for patients? This could mean a shorter […]
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Publication of The Pledge quarterly newsletter is led by the EHE Rare Cancer Charity (UK). EHE patient advocacy groups from around the globe. provide content including research news, patient and fundraising stories, and much more! Click here to view the most recent edition of our online EHE newsletter, The Pledge.
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