BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//National Organization for Rare Disorders - ECPv6.16.5//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:National Organization for Rare Disorders
X-ORIGINAL-URL:https://rarediseases.org
X-WR-CALDESC:Events for National Organization for Rare Disorders
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20250309T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20260308T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20261101T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20270314T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20271107T060000
END:STANDARD
END:VTIMEZONE
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261003T130000
DTEND;TZID=America/New_York:20261003T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000946-1791032400-1791037800@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/2026-10-03/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261012
DTEND;VALUE=DATE:20261017
DTSTAMP:20260226T142043Z
CREATED:20260226T142043Z
LAST-MODIFIED:20260226T142043Z
UID:10001169-1791763200-1792195199@rarediseases.org
SUMMARY:Cure HHT International Scientific Conference
DESCRIPTION:Join Cure HHT in Cape Cod\, October 12-16\, 2026\, as breakthroughs set sail at the 16th HHT International Scientific Conference. Together\, we’ll explore the latest advances in HHT research\, diagnosis\, and care — connecting scientists\, clinicians\, and innovators from across the globe. Engage in bold discussions\, share discoveries\, and help shape the next era of HHT science.
URL:https://rarediseases.org/event/cure-hht-international-scientific-conference/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261017T150000
DTEND;TZID=America/New_York:20261017T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000843-1792249200-1792256400@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/2026-10-17/
CATEGORIES:NORD Member Event
END:VEVENT
END:VCALENDAR