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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;VALUE=DATE:20260923
DTEND;VALUE=DATE:20260924
DTSTAMP:20260824T041141Z
CREATED:20260824T041141Z
LAST-MODIFIED:20260824T041141Z
UID:10001258-1790121600-1790207999@rarediseases.org
SUMMARY:Rare Cancer Day\, September 23 
DESCRIPTION:Rare Cancer Day\, September 23  \nRare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Spearheaded by the NORD Rare Cancer Coalition®\, which is composed of 30+ rare cancer-specific member organizations\, Rare Cancer Day is observed on September 23 to highlight the challenges patients face and to unify individuals living with rare cancers for awareness and early diagnosis. Join us for our Rare Cancer Day webinar\, and follow us throughout the month to learn more about patients\, caregivers\, and clinicians advocating for effective treatment for rare cancers.  
URL:https://rarediseases.org/event/rare-cancer-day-september-23/
CATEGORIES:NORD Events,NORD Member Event
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DTSTART;VALUE=DATE:20260923
DTEND;VALUE=DATE:20260924
DTSTAMP:20260919T034219Z
CREATED:20260919T034219Z
LAST-MODIFIED:20260919T034219Z
UID:10001269-1790121600-1790207999@rarediseases.org
SUMMARY:United Against Ataxia Hill Day
DESCRIPTION:Join the National Ataxia Foundation and Friedreich’s Ataxia Research Alliance in advocating for Ataxia and rare disease related policy issues during their annual United Against Ataxia Hill Day on September 23\, 2026! Advocates will have the opportunity to attend virtual meetings with members of Congress and their staffers to tell their stories and relay the importance of supporting NAF’s legislative initiatives. \nThis is a fully virtual event\, and you can expect to join 2-5 meetings throughout the day. Training will be provided before the event. Registration opens on August 10th. Reach out to courtney@ataxia.org or berkley.bell@curefa.org with any questions about this event!
URL:https://rarediseases.org/event/united-against-ataxia-hill-day/
CATEGORIES:NORD Member Event
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260924T160000
DTEND;TZID=America/New_York:20260924T170000
DTSTAMP:20260903T144909Z
CREATED:20260702T174604Z
LAST-MODIFIED:20260903T144909Z
UID:10001199-1790265600-1790269200@rarediseases.org
SUMMARY:NORD Volunteer Information Session
DESCRIPTION:In this session\, NORD staff will provide an overview of NORD’s volunteer programming. This is designed to give you a clear understanding of our mission and the various ways you can make an impact. We will conclude with an open-floor discussion\, providing a space for you to ask questions and determine the next steps for your volunteer journey. \nRegister Here
URL:https://rarediseases.org/event/nord-volunteer-meeting-2/
CATEGORIES:Advocate,For Clinicians and Researchers,For Patient Organizations,For Patients and Families,NORD Events,Rare Action Network Events
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/03/Volunteer-Meeting-Social-Media-Graphic.png
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260925
DTEND;VALUE=DATE:20260927
DTSTAMP:20260717T175154Z
CREATED:20260717T175154Z
LAST-MODIFIED:20260717T175154Z
UID:10001246-1790294400-1790467199@rarediseases.org
SUMMARY:2026 Wilson Disease Association Annual Conference
DESCRIPTION:Registration is now open for the 2026 WDA Annual Conference\, taking place September 25–26 in Chicago. \nCo-hosted by Northwestern University Feinberg School of Medicine’s Wilson Disease Center of Excellence and the Wilson Disease Association\, the conference will bring together healthcare professionals\, researchers\, advocates\, industry partners\, patients\, and caregivers from across the Wilson disease community. \nThe event features a dual-track agenda\, including a physician education program for healthcare professionals and dedicated programming for patients and families. \nJoin us for two days of education\, networking\, collaboration\, and community-building with leaders across the Wilson disease field. \nEarly-bird registration is available through August 16. \nView the full agenda\, registration details\, sponsorship opportunities\, travel assistance information\, and hotel information at: https://wilsondisease.org/get-involved/events/annual-conference/ \n#WilsonDisease #RareDisease #MedicalEducation #ClinicalResearch #PatientAdvocacy
URL:https://rarediseases.org/event/2026-wilson-disease-association-annual-conference/
CATEGORIES:NORD Member Event
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