SDS PFDD Meeting EL-PFDD Meeting for Shwachman-Diamond Syndrome June 4 This meeting is an Externally-led Patient-Focused Drug Development meeting, which is a special type of meeting developed by the FDA …
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🧪 MPN Pathways: Empowered Voices in Research – FDA 101 Webinar Date: Thursday, June 5, 2025Time: 5:00–6:00 PM CTFormat: Live via ZoomRegistration: Sign up herempnadvocacy.com+4Reddit+4The Patient Story+4 Join us for …
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Join NORD's Rare Action Network in South Portland, ME on Friday, June 6 from 9am to 1pm for advocacy training, policy education, and more! This event is free to attend …
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"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. …
