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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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SUMMARY:Primary Care: The Unsung Heroes in Rare Disease Diagnostics
DESCRIPTION:The UNC Rare Disease Network is hosting an upcoming virtual event for primary care providers:  \n“Primary Care: The Unsung Heroes in Rare Disease Diagnostics” \nThis virtual\, interactive event focuses on the diagnostic odyssey and how genetic testing can be implemented to help clinicians better support patient care. The presentation is geared towards primary care providers and will discuss genetic basics\, the benefits and limitations of genetic testing\, and genetic testing available through UNC Health. Following a short presentation\, a panel of MDs and genetic counselors from various specialties within UNC will be available for questions and expert opinions. \nThe event is eligible for CME credit and will take place twice: \n\nFriday\, October 10th from 12:00 PM – 1:00 PM\nThursday\, October 30th from 12:00 PM – 1:00 PM\n\nEvent Agenda: \n\nVirtual Presentation\nPanelist Q&A\nSurvey\n\nPresenter for October 30th event: \n\nDr. Muge Calikoglu (MD/MPH): Clinical Geneticist\n\nRegister here!
URL:https://www.med.unc.edu/raredisease/event/primary-care-the-unsung-heroes-in-rare-disease-diagnostics/2025-10-10/
LOCATION:NC
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251030T120000
DTEND;TZID=America/New_York:20251030T130000
DTSTAMP:20260518T224147
CREATED:20251030T191405Z
LAST-MODIFIED:20251112T194124Z
UID:10000003-1761825600-1761829200@www.med.unc.edu
SUMMARY:Primary Care: The Unsung Heroes in Rare Disease Diagnostics
DESCRIPTION:The UNC Rare Disease Network is hosting an upcoming virtual event for primary care providers:  \n“Primary Care: The Unsung Heroes in Rare Disease Diagnostics” \nThis virtual\, interactive event focuses on the diagnostic odyssey and how genetic testing can be implemented to help clinicians better support patient care. The presentation is geared towards primary care providers and will discuss genetic basics\, the benefits and limitations of genetic testing\, and genetic testing available through UNC Health. Following a short presentation\, a panel of MDs and genetic counselors from various specialties within UNC will be available for questions and expert opinions. \nThe event is eligible for CME credit and will take place twice: \n\nFriday\, October 10th from 12:00 PM – 1:00 PM\nThursday\, October 30th from 12:00 PM – 1:00 PM\n\nEvent Agenda: \n\nVirtual Presentation\nPanelist Q&A\nSurvey\n\nPresenter for October 30th event: \n\nDr. Muge Calikoglu (MD/MPH): Clinical Geneticist\n\nRegister here!
URL:https://www.med.unc.edu/raredisease/event/primary-care-the-unsung-heroes-in-rare-disease-diagnostics/2025-10-30/
LOCATION:NC
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251106T110000
DTEND;TZID=America/New_York:20251106T130000
DTSTAMP:20260518T224147
CREATED:20251030T191048Z
LAST-MODIFIED:20251030T191048Z
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/
LOCATION:NC
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260227T140000
DTEND;TZID=America/New_York:20260227T170000
DTSTAMP:20260518T224147
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/
LOCATION:NC
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260328T090000
DTEND;TZID=America/New_York:20260328T140000
DTSTAMP:20260518T224147
CREATED:20260227T212114Z
LAST-MODIFIED:20260303T143437Z
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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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260503T120000
DTEND;TZID=America/New_York:20260503T140000
DTSTAMP:20260518T224147
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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