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X-WR-CALDESC:Events for National Organization for Rare Disorders
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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;VALUE=DATE:20260417
DTEND;VALUE=DATE:20260423
DTSTAMP:20260202T220805Z
CREATED:20260202T220635Z
LAST-MODIFIED:20260202T220805Z
UID:10001123-1776384000-1776902399@rarediseases.org
SUMMARY:Rare Cancer Coalition at AACR! 
DESCRIPTION:Rare Cancer Coalition at AACR! April 17 – 22\, San Diego\, CA The Rare Cancer Coalition will have a booth at the American Association for Cancer Research (AACR) Annual Meeting\, where we’ll be connecting with researchers\, clinicians\, and advocates to highlight the vital role of the rare cancer patient community. Stop by to learn more about our network of Rare Cancer Coalition members\, and to hear more about our work to bridge the gap between patient advocates and new research initiatives.  
URL:https://rarediseases.org/event/rare-cancer-coalition-at-aacr/
CATEGORIES:NORD Member Event
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DTSTART;TZID=America/New_York:20260418T150000
DTEND;TZID=America/New_York:20260418T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000837-1776524400-1776531600@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/2026-04-18/
CATEGORIES:NORD Member Event
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260423
DTEND;VALUE=DATE:20260426
DTSTAMP:20260313T202408Z
CREATED:20260226T195450Z
LAST-MODIFIED:20260313T202408Z
UID:10001178-1776902400-1777161599@rarediseases.org
SUMMARY:AIU Summit
DESCRIPTION:The AIU Summit is a national educational and support conference bringing together patients\, caregivers\, and healthcare professionals to learn about adrenal insufficiency management\, crisis prevention\, and the latest treatment advances while building a supportive community.\nAIU is offering both virtual and in-person registration. It is taking place April 23-25th\, 2026\, at DoubleTree by Hilton Minneapolis Airport. There is an outline of our agenda\, speaker & sponsor information\, and registrations at the link provided below. https://aiunited.org/aiu_events/
URL:https://rarediseases.org/event/aiu-summit/
CATEGORIES:NORD Member Event
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