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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:20260227T140000
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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/
LOCATION:NC
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260328T090000
DTEND;TZID=America/New_York:20260328T140000
DTSTAMP:20260520T054025
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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/
LOCATION:NC
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DTSTART;TZID=America/New_York:20260503T120000
DTEND;TZID=America/New_York:20260503T140000
DTSTAMP:20260520T054025
CREATED:20260429T144333Z
LAST-MODIFIED:20260429T144333Z
UID:10000007-1777809600-1777816800@www.med.unc.edu
SUMMARY:Bowling Uplifting Experience with UNC Football
DESCRIPTION:Uplifting Athletes is a national nonprofit that harnesses the power of sport to invest in the lives of individuals and families impacted by rare disease (both children and adults). They are excited to invite rare individuals and families to join us for a one-of-a-kind bowling event at Bowlero Durham with the UNC Football Team on Sunday\, May 3rd from 12-2pm ET! Register to attend for free and bowl with the Tarheels! Bowlero is ADA accessible. This event will include lane and shoe rentals\, t-shirts\, food\, beverages\, and more. This Uplifting Experience is inclusive and accommodates individuals of all ages and abilities. \nBowling Uplifting Experience with UNC Football\n📅 Sunday\, May 3\n⏰ 12-2pm ET \nThis free\, inclusive event provides families the opportunity to spend meaningful time with UNC Football student-athletes in a fun\, supportive environment. \nHERE is the link to register.
URL:https://www.med.unc.edu/raredisease/event/bowling-uplifting-experience-with-unc-football/
LOCATION:Bowlero Durham\, 4508 Durham-Chapel Hill Blvd\, Durham\, NC\, 27707\, United States
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DTSTART;TZID=America/New_York:20260518T090000
DTEND;TZID=America/New_York:20260518T163000
DTSTAMP:20260520T054025
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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