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X-WR-CALNAME:National Organization for Rare Disorders
X-ORIGINAL-URL:https://rarediseases.org
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261101T120000
DTEND;TZID=America/New_York:20261101T133000
DTSTAMP:20260922T155610Z
CREATED:20260922T155610Z
LAST-MODIFIED:20260922T155610Z
UID:10001275-1793534400-1793539800@rarediseases.org
SUMMARY:Pericarditis Alliance Support Groups - Pericarditis Under 30 hosted by Alexa
DESCRIPTION:Pericarditis Alliance is so pleased to offer three new monthly virtual support groups for patients and their families to check in\, connect\, and learn from each other. Registration is open for one month at a time and will be open for each group by the Friday after the previous meeting. Register for each group through the calendar below. \nPericarditis Under 30 hosted by Alexa – A group to bring much needed targeted support for the younger demographic who are hit with this disease at a time when they are still trying to figure themselves out and making plans for their future — often being forced to pivot in their career and life goals. First Sunday of the month at 12pm ET. Open to pericarditis patients under 30\, and their caregivers. \nSupport Groups | Pericarditis Alliance
URL:https://rarediseases.org/event/pericarditis-alliance-support-groups-pericarditis-under-30-hosted-by-alexa/2026-11-01/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261107T130000
DTEND;TZID=America/New_York:20261107T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000947-1794056400-1794061800@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/2026-11-07/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261107T130000
DTEND;TZID=America/New_York:20261107T143000
DTSTAMP:20260922T155902Z
CREATED:20260922T155902Z
LAST-MODIFIED:20260922T155902Z
UID:10001335-1794056400-1794061800@rarediseases.org
SUMMARY:Pericarditis Alliance - Shares From the Collective hosted by Lisa
DESCRIPTION:Pericarditis Alliance is so pleased to offer three new monthly virtual support groups for patients and their families to check in\, connect\, and learn from each other. Registration is open for one month at a time and will be open for each group by the Friday after the previous meeting. Register for each group through the calendar below. \nPericarditis Under 30 hosted by Alexa – A group to bring much needed targeted support for the younger demographic who are hit with this disease at a time when they are still trying to figure themselves out and making plans for their future — often being forced to pivot in their career and life goals. First Sunday of the month at 12pm ET. Open to pericarditis patients under 30\, and their caregivers. \nShares From the Collective hosted by Lisa – Where participants will have the option to follow different themes and topics for a few sessions at a time while bringing their own lived experiences to the discussion to learn from and support each other. First Saturday of the month at 1pm ET. Open to all pericarditis patients and caregivers. \nPericarditis International hosted by Andy from England\, allowing us to support more patients in Europe and nearby time zones. Andy says upon getting pericarditis\, his biggest battle was fighting himself. His sessions will have a large focus on the psychological and mental health aspects of pericarditis. Second Sunday of the month at 4:30pm BST\, 11:30am ET. Open to all pericarditis patients and caregivers. \nPericarditis Speaker Series with Rachel – A professional speaker series including presentations and discussions by special guests with expertise in pericarditis lifestyle and health management\, clinical trials\, and more. These are on Mondays with dates and times TBD. Open to all pericarditis patients and caregivers. \nSupport Groups | Pericarditis Alliance
URL:https://rarediseases.org/event/pericarditis-alliance-shares-from-the-collective-hosted-by-lisa/2026-11-07/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261113T080000
DTEND;TZID=America/New_York:20261113T180000
DTSTAMP:20260915T154605Z
CREATED:20260915T154605Z
LAST-MODIFIED:20260915T154605Z
UID:10001263-1794556800-1794592800@rarediseases.org
SUMMARY:Cystinosis Research Network (CRN) Scientific Symposium: Advancing the Future of Cystinosis Care
DESCRIPTION:Cystinosis Research Network (CRN) Scientific Symposium: Advancing the Future of Cystinosis Care\nDate: November 13\, 2026\n8:00am – 6:00pm ET\nOne day\, in-person event\nWeber’s Hotel 3050 Jackson Ave\, Ann Arbor\, MI 48103\nRegistration and details at https://cystinosis.org/event/2026symposium/\nQuestions? Email info@cystinosis.org \nThe CRN Scientific Symposium is a one-day\, peer-to-peer meeting bringing together physicians\, clinicians\, researchers\, and scientists to explore emerging developments in cystinosis and lysosomal storage disorders — from newborn screening and novel treatment approaches to gene\, mRNA\, and cell-based therapies. Sessions will also examine advances across the broader lysosomal storage disorder landscape\, fostering exchange and collaboration among colleagues advancing cystinosis research and treatment. \nChaired by Elizabeth Ames\, MD\, PhD who serves as Clinical Assistant Professor at the University of Michigan and is Co-Director at the Michigan NORD Rare Disease Center of Excellence. \nCRN is a NORD member organization\nContact: Clair Johnstone\, cjohnstone@cystinosis.org
URL:https://rarediseases.org/event/cystinosis-research-network-crn-scientific-symposium-advancing-the-future-of-cystinosis-care/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261119
DTEND;VALUE=DATE:20261122
DTSTAMP:20260926T065547Z
CREATED:20260926T065547Z
LAST-MODIFIED:20260926T065547Z
UID:10001397-1795046400-1795305599@rarediseases.org
SUMMARY:IndoUSRare - 12th Annual Conference of the Society for Mitochondrial Research and Medicine
DESCRIPTION:SMRM 2026 — 12th Annual Conference of the Society for Mitochondrial Research and Medicine \nDescription:\nSMRM 2026 brings together clinicians\, researchers\, patient advocates\, and rare disease experts to advance conversations around mitochondrial science\, medicine\, research\, and patient care. In collaboration with IndoUSrare\, the conference will provide a platform for knowledge sharing\, scientific exchange\, and collaboration across the rare disease ecosystem. \nDate: November 19–21\, 2026\nTime: 10:00 AM–5:00 PM\nVenue: Narayana Health City\, Bengaluru\, India\nFormat: In-person \n  \nThe 12th Annual Conference of the Society for Mitochondrial Research and Medicine (SMRM 2026)is bringing together experts and stakeholders working to advance understanding and care in mitochondrial diseases. \nFrom scientific discovery to clinical care and patient advocacy\, the conference will create opportunities for meaningful exchange\, collaboration\, and new connections. \nNovember 19–21\, 2026\nNarayana Health City\, Bengaluru\, India\n10:00 AM–5:00 PM \nJoin IndoUSRare\, researchers\, clinicians\, patient advocates\, and rare disease leaders as we work toward a future where scientific progress translates into better outcomes for patients. \nSave the dates and be part of SMRM 2026: https://www.indousrare.org/smrm/
URL:https://rarediseases.org/event/indousrare-12th-annual-conference-of-the-society-for-mitochondrial-research-and-medicine/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261121T150000
DTEND;TZID=America/New_York:20261121T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000844-1795273200-1795280400@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/2026-11-21/
CATEGORIES:NORD Member Event
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