This workshop workshop provides a forum for collaborative and productive multidisciplinary discussions to advance the understanding of the regulatory and scientific issues surrounding the use of patient-reported outcome (PRO) measures in cancer clinical trials. Patient advocates Patty Spears and Jane Perlmutter and are among the presenters.
Read the description with agenda and speaker biographies attached
ACE Meeting. May 19, 2026. 6:00pm ET. After cancer treatment, focusing on your overall wellness can help you feel stronger, regain control, and improve your quality of life. Many people experience side effects like fatigue, pain, stress, or trouble sleeping. Still, healthy habits such as eating well, staying active, taking supplements, and getting enough rest…
ACE Meeting. May 5, 2026. 6:00pm ET. Allison Rosen will cover the topic of clinical trial cooperative groups, starting with what they are, why they exist and the role advocates play in the various groups. I will briefly touch on the roles advocates play in these groups such as trials design, protocol development, consent and…
ACE Meeting, April 23, 2026, 1:00pm ET, 10:00am PT. Presentation by Mary-Gloria Orji. The topic is what it is. The stigma we face while going through cancer in my country and how people believe you must have done something wrong to offend God which is why you are being punished. Mary-Gloria Orji is a passionate…
ACE Meeting, Thursday, March 26, 2026, 1:00 – 2:00pm ET. Presentation by Stef Gayhart. Trauma-Informed Care is a conceptual framework that can be embedded into practiceto enable people and organizations to become aware of and interact with others in away that takes into account each individual’s potential traumatic history. We will brieflydiscuss the history of…
Many advocates want to publish their personal stories, but often aren’t always sure where to begin. My advice is to start with your “why.” Ask yourself: Why do I want to tell this story? Is it to educate others, encourage early screening, influence research, or help another patient feel less alone? Your purpose will help…
ACE Meeting: Tuesday, April 7, 2026. 2:00 – 3:00 pm ET. Presentation by Annamaria Scaccia. Tips and lessons on how to partner with nonprofit cancer organizations to create, develop, and scale a patient-centered advocacy podcast. Annamaria Scaccia is an artist, award-winning journalist, and one-kidney bodybuilder who has survived both kidney cancer and thyroid cancer by…