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 …

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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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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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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

Connect Virtually with Other Pemphigus and Pemphigoid Patients and Caregivers in the Southern California area on June 24th. Living with pemphigus or pemphigoid is hard enough, but when you feel alone it seems even harder. You are not alone.