"The 2025 FPA Conference is a two-day in-person event connecting the worldwide facial pain community with experts who diagnose and treat people affected by facial pain. We are thrilled to …
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Overview The Olivia's Light Pediatric Rare Disease Conference aims to improve patient care for children and families impacted by a rare disease. The conference will highlight different aspects of the …
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Join the Superficial Siderosis Research Alliance (SSRA) for our first three-day symposium dedicated to patients, caregivers, clinicians, and researchers focused on advancing care, treatment, and research for superficial siderosis. June …
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The purpose of the RCC Policy Priorities Working Group is to monitor emerging federal and state policies that impact the rare cancer community. Members will work to equip advocates and …
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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 …
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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 …
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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 …
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Calling all PKU researchers! The National PKU Alliance annual grant research program is now open. Visit https://npkua.grantplatform.com/ to view the request for proposals and to apply. The deadline is Monday, …
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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 …
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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. …
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 …
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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 …
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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, …
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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 …
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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 …
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