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X-WR-CALDESC:Events for National Organization for Rare Disorders
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260226
DTEND;VALUE=DATE:20270101
DTSTAMP:20260226T184751Z
CREATED:20260226T184751Z
LAST-MODIFIED:20260226T184751Z
UID:10001176-1772064000-1798761599@rarediseases.org
SUMMARY:MPN Research Foundation Global Patient Unmet Needs Assessment
DESCRIPTION:2026 Global Patient Unmet Needs Assessment is open! @MPNResearch Foundation invites individuals living with a myeloproliferative neoplasm (MPN) to participate in the 2026 Global Patient Unmet Needs Assessment. Your insights help guide future research\, improve resources\, and highlights where unmet needs remain for those living with MPNs worldwide. \nTopics include:\n• MPN diagnosis & monitoring\n• Therapies & clinical trials\n• Symptoms & related conditions\n• Access to information & resources\n• Emotional health & quality of life \nTake the assessment: \nhttps://www.tfaforms.com/5184100\nPreview 2024 assessment highlights:\nhttps://mpnresearchfoundation.org/mpn-unmet-needs-assessment-preview/\nPreliminary results will be shared in Summer 2026. Please share widely — especially with international MPN communities — to help identify unmet needs worldwide.
URL:https://rarediseases.org/event/mpn-research-foundation-global-patient-unmet-needs-assessment/
CATEGORIES:NORD Member Event
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260905T130000
DTEND;TZID=America/New_York:20260905T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000945-1788613200-1788618600@rarediseases.org
SUMMARY:Pericarditis Alliance Virtual Support Group Every 1st Saturday
DESCRIPTION: \nPericarditis Alliance offers a once a month virtual support group for patients and their families to check in\, connect and learn from each other. They invite speakers to talk about topics such as adopting an anti-inflammatory diet and functional medicine. At the end of each meeting\, they invite participants to join in a short meditation. \n  \nThe next Virtual Support Group meeting is September 6\, 2025 1:00 pm EST\, 10:00 am PST\, and there will be a meeting on the first Saturday of each Month. Sign up here: https://pericarditisalliance.org/events/
URL:https://rarediseases.org/event/pericarditis-alliance-virtual-support-group-every-1st-saturday/2026-09-05/
CATEGORIES:NORD Member Event
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260913
DTEND;VALUE=DATE:20260914
DTSTAMP:20260630T123933Z
CREATED:20260630T123933Z
LAST-MODIFIED:20260630T123933Z
UID:10001237-1789257600-1789343999@rarediseases.org
SUMMARY:ED for EDS4 Poker Run
DESCRIPTION:ED for EDS4 presents its 1st Annual Poker Run on Sunday\, September 13 in Charlton\, MA. \nClick here to enlarge the image.
URL:https://rarediseases.org/event/ed-for-eds4-poker-run/
ATTACH;FMTTYPE=image/jpeg:https://rarediseases.org/wp-content/uploads/2026/06/Poker-Run-.jpg
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260918
DTEND;VALUE=DATE:20260920
DTSTAMP:20260601T195634Z
CREATED:20260601T195634Z
LAST-MODIFIED:20260601T195634Z
UID:10001233-1789689600-1789862399@rarediseases.org
SUMMARY:2026 MSD Virtual Summit
DESCRIPTION:Register today for the 2026 MSD Virtual Summit! This FREE\, two-day\, online gathering will bring together researchers\, clinicians\, families\, advocates\, and partners from around the world. Through shared knowledge\, lived experience\, and innovative efforts\, we move closer to better care and future therapies for Multiple Sulfatase Deficiency. \nIn the coming weeks\, we will update this page with more details on the full schedule\, confirmed speakers\, and more for this two-day Virtual Summit. \nThe program will center around core themes highlighted below: areas where collaboration among clinicians\, researchers\, families\, advocates and partners is driving real progress. Because\, in partnership\, we thrive. \nTogether\, we can build a future where everyone affected by MSD can live without limitation.
URL:https://rarediseases.org/event/2026-msd-virtual-summit/
CATEGORIES:NORD Member Event
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260919
DTEND;VALUE=DATE:20260920
DTSTAMP:20260608T143929Z
CREATED:20260608T143929Z
LAST-MODIFIED:20260608T143929Z
UID:10001235-1789776000-1789862399@rarediseases.org
SUMMARY:Ramsay Hunt Syndrome Foundation Face Forward 2026 Patient Support Summit
DESCRIPTION:On September 19\, the 2026 Face Forward Patient Support Summit will bring together patients\, caregivers\, clinicians and advocates for an inspiring day of connection\, education\, and empowerment. \nThis event will feature: \n\n\nExpert medical presentations on the latest RHS research and treatment advances \n\n\nInteractive workshops and wellness sessions for patients and caregivers \n\n\nNetworking and advocacy opportunities to strengthen our growing community \n\n\n​​​​​ \n\n\n\nRegister\n\n\nFace Forward 2026: RHSF Patient Support Summit\nSeptember 19\, 2026\n\n\nEarly Bird Rate: $135 (until June 15th)Regular Rate: $160 \n​ \nLocation: \nFriday Center\, 100 Friday Center Dr \nChapel Hill\, NC 27517 \n​ \nDate and time: Sat\, Sep 19\, 2026 8:00 AM – 4:00 PM \nOrganizer: Ramsay Hunt Syndrome Foundation \n2026 Face Forward Summit
URL:https://rarediseases.org/event/ramsay-hunt-syndrome-foundation-face-forward-2026-patient-support-summit/
CATEGORIES:NORD Member Event
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260919T150000
DTEND;TZID=America/New_York:20260919T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000842-1789830000-1789837200@rarediseases.org
SUMMARY:🌟 Raymond A. Wood Foundation Survivor Support Group – Monthly Virtual Meetings
DESCRIPTION:Survivor Support Group – Monthly Virtual Meetings\nDates: Third Saturday of each monthTime: 3:00 PM ETLocation: Online via ZoomRegistration: Register here \nThe Raymond A. Wood Foundation’s Survivor Support Group offers a monthly virtual gathering for adult survivors of hypothalamic-pituitary brain tumors. Moderated by brain tumor survivor Jason Burris\, these sessions provide a safe space to share experiences\, discuss challenges\, and connect with others who understand your journey. \nEach meeting includes breakout sessions tailored to different age groups\, ensuring that all participants can engage in meaningful conversations. Whether you’re seeking support\, camaraderie\, or simply a place to be heard\, this group is here for you. \nParticipation is free\, but registration is required. For more information or assistance\, please contact outreach@rawoodfoundation.org.
URL:https://rarediseases.org/event/%f0%9f%8c%9f-raymond-a-wood-foundation-survivor-support-group-monthly-virtual-meetings/2026-09-19/
CATEGORIES:NORD Member Event
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