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X-ORIGINAL-URL:https://www.med.unc.edu/raredisease
X-WR-CALDESC:Events for Rare Disease Network at UNC
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DTSTART;TZID=America/New_York:20251106T110000
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UID:10000001-1762426800-1762434000@www.med.unc.edu
SUMMARY:Advancing Diagnosis of Rare Diseases: A Webinar
DESCRIPTION:Over 20 million people in the U.S. live with a rare disease\, and many face years of uncertainty and delayed diagnosis. \nThe National Academies’ Forum on Advancing Diagnostic Excellence will host a public webinar on November 6 exploring opportunities to improve rare disease diagnosis and the patient journey towards a timely and accurate diagnosis. \nDiscussions will focus on: \n\nBarriers that patients face in obtaining timely and accurate diagnosis\nThe role of emerging technologies and diagnostic innovations\nHealth professional education\, care coordination\, and interdisciplinary teamwork to reduce diagnostic delays\nPolicy and health system-level strategies to strengthen the diagnostic journey for patients with rare diseases\n\nVisit the National Academies website for more information and to register!
URL:https://www.med.unc.edu/raredisease/event/advancing-diagnosis-of-rare-diseases-a-webinar/
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DTSTART;TZID=America/New_York:20260227T140000
DTEND;TZID=America/New_York:20260227T170000
DTSTAMP:20260414T005726
CREATED:20260115T194744Z
LAST-MODIFIED:20260413T132737Z
UID:10000004-1772200800-1772211600@www.med.unc.edu
SUMMARY:Symposium – Beyond the Horizon: Charting the Next Era of Rare Disease Progress at UNC
DESCRIPTION:
URL:https://www.med.unc.edu/raredisease/rare-disease-working-groups/rde3/rare-disease-day-symposiums/
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DTSTART;TZID=America/New_York:20260328T090000
DTEND;TZID=America/New_York:20260328T140000
DTSTAMP:20260414T005726
CREATED:20260227T212114Z
LAST-MODIFIED:20260303T143437Z
UID:10000005-1774688400-1774706400@www.med.unc.edu
SUMMARY:Raleigh Run for Rare 5k
DESCRIPTION:The National MPS Society will host a timed 5K run and 1 mile walk\, beginning at 9 AM on Saturday\, March 28.  The 1 mile walk will begin at 9:05 AM.  Packet pickup and day of registration will open at 7:30 AM.  A picnic for attendees and volunteers will be held after the race! \nThis event is open to individuals of all ages and abilities. Once you register\, either as an individual or as part of a team\, you are set. We would love to see the posts of pictures participants on their 5K route. This is completely optional – but since our goal is to bring awareness to MPS and ML\, we want to do just that. And by using #MPSAwareness on your social media posts\, we will be able to keep up with the fun. \nLocation:\nLake Crabtree Park\n1400 Aviation Parkway\nMorrisville\, NC US 27560 \nMore information can be found here! \n 
URL:https://www.med.unc.edu/raredisease/event/raleigh-run-for-rare-5k/
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DTSTART;TZID=America/New_York:20260518T090000
DTEND;TZID=America/New_York:20260518T163000
DTSTAMP:20260414T005726
CREATED:20260413T131939Z
LAST-MODIFIED:20260413T132302Z
UID:10000006-1779094800-1779121800@www.med.unc.edu
SUMMARY:Advancing Novel Surrogate Endpoints For Rare Disease Drug Development Workshop
DESCRIPTION:Advancing treatments for rare diseases requires innovative ways to measure success. \nJoin FDA\, researchers\, clinicians\, and innovators for a free\, one-day virtual workshop open to the public focused on emerging scientific and regulatory pathways for advancing surrogate endpoints in rare disease drug development. \nThis workshop is being convened in support of the Rare Disease Endpoint Advancement (RDEA) Pilot Program\, established under the FDA User Fee Reauthorization Act of 2022 and the Food and Drug Omnibus Reform Act of 2022. The RDEA program is intended to support the development of efficacy endpoints for rare disease treatments by fostering dialogue among FDA\, researchers\, clinicians\, industry\, patient communities\, and other stakeholders. \nTopics to be Covered\n\nMechanistic and Translational Evidence Considerations for Supporting a Novel Surrogate Endpoint Biomarker (FDA Presentation)\nPathways for Engagement with FDA related to Biomarker Science (FDA Presentation)\nCases Studies of RLSEs in rare disease drug development (FDA Presentation)\nLeveraging Disease Models from New Approach Methodologies and Biochemical Signatures as Endpoints (Invited Panelists)\nUse of Digital Health Technologies as Biomarkers (Invited Panelists)\nReal-World Whole-Person Data Management (Invited Panelists)\n\nPlease register for this event via the event website.
URL:https://www.med.unc.edu/raredisease/event/advancing-novel-surrogate-endpoints-for-rare-disease-drug-development-workshop/
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