Pathways to Care Expo in Forth Smith, AR
The Pathways to Care Expo is a community health fair designed to connect people impacted by rare diseases to community based resources and support services. This free event is hosted …
The Pathways to Care Expo is a community health fair designed to connect people impacted by rare diseases to community based resources and support services. This free event is hosted …
Please join XLID98 Foundation on May 31, 2025 for their first conference for the XLID98 community. This virtual conference is meant as an opportunity for you to hear from medical …
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Rare disease breakthroughs require collaboration. Join a community of researchers, clinicians, industry leaders, and others at the NORD® Rare Disease Scientific Symposium to share knowledge, exchange ideas, and forge partnerships …
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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One in 10 Americans lives with rare disease, many of whom fight a daily battle to access the care and support they need. Your gift to the National Organization for Rare Disorders (NORD®) funds life-changing programs and helps us advance policies and research to ensure that everyone gets the care they need AND deserve.
