Join NORD for a virtual Community Conversation on The Living Rare Study, the first-ever large-scale study in the US to track the evolving experience of thousands of individuals and caregivers impacted by rare diseases! Attendees will receive step-by-step education on how to participate in the study. NORD staff will demonstrate how to create an IAMRARE …
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Cutaneous Lymphoma Foundation – Upcoming Patient Education Event This free Patients Seminar is offered to help patients, care partners and others affected by cutaneous lymphoma receive accurate information about cutaneous lymphoma and connect with other people who share similar experiences. More information here! https://www.clfoundation.org/pscl-dublin Saturday, 14 June 2025 9:30am - 13:00pm
FACES Camp - a camp for kids with facial differences! FACES Camp is a traditional overnight summer camp that brings together youth from throughout the United States with craniofacial differences to experience a week at camp with other children who have similar medical conditions. Located in Cloudland, GA, on Lookout Mountain, the camp is for …
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🎙️ MPN Pathways: Communicating with Researchers & Understanding Clinical Trials Date: Thursday, June 17, 2025Time: 5:00–6:00 PM CTFormat: Live Zoom WebinarRegister here: Sign Up Now Join the next session of the MPN Pathways: Empowered Voices in Research series, focused on helping MPN patients and caregivers better understand clinical trials and how to communicate effectively with …
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Each year, UMDF’s Mitochondrial Medicine Conference brings together the best minds in mitochondrial medicine and the patients we serve. With over 700 attendees representing almost every state in the U.S. and more than 15 different countries, the Conference is recognized as the world’s preeminent event for mitochondrial disease. Four Day Focus on Mitochondrial Medicine for …
The Pheo Para Alliance's next education webinar, Pediatrics Webinar, is happening on Thursday, June 19th, at 8:30am PST/11:30am ET. Dr. Ruth Casey and Dr. Christina Pamporaki will offer valuable information on pediatric pheo/para, while also discussing the recent release of the consensus statement. Use the link to register now to save your seat …
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Dates: June 20–22, 2025Location: Holiday Inn Orlando – Disney Springs, FLRegistration: Register here Join us for the Gorlin Syndrome Alliance’s 2025 National Conference, a pivotal event for individuals and families affected by Gorlin syndrome. This year’s theme, “Our Story, Our Science,” emphasizes the integral role of patient experiences in shaping research and care.Facebook+5Gorlin Syndrome Alliance+5Gorlin …
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The Gorlin Syndrome Alliance Patient Conference only happens every two years, and they are excited to reunite with the community June 20-22 in Orlando! People who live with a rare, hereditary cancer often say they have never met anyone outside their family who share their diagnosis: conferences provide a space to connect, learn and leverage …
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The Sisters' Hope Foundation externally-led patient focused drug development (EL-PFDD) session will be held on Friday June 20th, 2025. Information and insights gained during this meeting will be summarized in the "Voice of the Patient" report that will be published for public use. Register to participate in person or virtually through Zoom. Please contact Erin …
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Survivor Support Group – Monthly Virtual Meetings Dates: Third Saturday of each monthTime: 3:00 PM ETLocation: Online via ZoomRegistration: Register here The Raymond A. Wood Foundation's Survivor Support Group offers a monthly virtual gathering for adult survivors of hypothalamic-pituitary brain tumors. Moderated by brain tumor survivor Jason Burris, these sessions provide a safe space to …
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🩺 2025 SNMMI Patient Education Day PheoPara Alliance Date: Sunday, June 22, 2025Location: New Orleans Convention Center, New Orleans, LAFormat: Hybrid (In-person & Virtual)Registration: Register here Join the Society of Nuclear Medicine and Molecular Imaging (SNMMI) for a comprehensive day of learning and connection. This free event offers patients and caregivers insights into nuclear medicine, …
Join the IPPF @healourskin on June 23rd for a Patient Education Webinar on Corticosteroids for Pemphigus and Pemphigoid and How to Manage Side Effects with Dr. Rachel Lipman, MD, Dermatologist and Internist at Northwestern Memorial Hospital in Chicago, Illinois. For more information and to register online, visit: https://zoom.us/webinar/register/WN_ixSN-AsSTJO-ZLh78g_P_Q
