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X-WR-CALDESC:Events for National Organization for Rare Disorders
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260620T150000
DTEND;TZID=America/New_York:20260620T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000839-1781967600-1781974800@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/2026-06-20/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260617
DTEND;VALUE=DATE:20260621
DTSTAMP:20260608T141144Z
CREATED:20260608T141144Z
LAST-MODIFIED:20260608T141144Z
UID:10001234-1781654400-1781999999@rarediseases.org
SUMMARY:United Mitochondrial Disease Foundation's Mitochondrial Medicine Conference 2026 -- June 17-20 in Orlando
DESCRIPTION:NORD member @United Mitochondrial Disease Foundation’s Mitochondrial Medicine Conference 2026 — June 17-20 in Orlando — brings together families and global leaders\, scientists\, and clinicians for four days of cutting-edge research\, emerging therapies\, and meaningful collaboration with patients to accelerate progress toward a cure. Patients and families can connect with top specialists\, join educational sessions and “Ask the Mito Doc” panels\, and find community\, resources\, and support through a dedicated three-day family program. Learn more at www.umdfconference.org.
URL:https://rarediseases.org/event/united-mitochondrial-disease-foundations-mitochondrial-medicine-conference-2026-june-17-20-in-orlando/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260615
DTEND;VALUE=DATE:20260616
DTSTAMP:20260529T163811Z
CREATED:20260529T163811Z
LAST-MODIFIED:20260529T163811Z
UID:10001231-1781481600-1781567999@rarediseases.org
SUMMARY:2026-2027 NPKUA Grant Program
DESCRIPTION:National PKU Alliance (NPKUA) supports an annual grant program to fund the most critical projects working to improve the lives of individuals with PKU. The 2026-2027 NPKUA Grant Program is now accepting proposals for funding for PKU research. \nEligible applicants must have an advanced degree(s) and hold a position at an established clinical/academic/research institution. Investigators early in their career are encouraged to apply. Please note that representatives working at a for-profit industry company working on PKU are not eligible to apply. See the complete request for proposals here. \nApplications may be submitted at https://npkua.grantplatform.com/. All applications must be submitted by Monday\, June 15\, 2026\, at 11:59pm ET. Late applications will not be accepted for review
URL:https://rarediseases.org/event/2026-2027-npkua-grant-program/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260606T130000
DTEND;TZID=America/New_York:20260606T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000942-1780750800-1780756200@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/2026-06-06/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260529
DTEND;VALUE=DATE:20260603
DTSTAMP:20260202T220753Z
CREATED:20260202T220753Z
LAST-MODIFIED:20260202T220753Z
UID:10001124-1780012800-1780444799@rarediseases.org
SUMMARY:Rare Cancer Coalition at ASCO! 
DESCRIPTION:Rare Cancer Coalition at ASCO!\nMay 29 – June 2\, Chicago\, IL  \nThe Rare Cancer Coalition will have a booth in the Patient Advocacy Pavilion at the American Society of Clinical Oncology Annual Meeting\, where we’ll be engaging with patients\, caregivers\, and oncology professionals to share resources and highlight the rare community. Visit us to learn how we support our network of Rare Cancer Coalition members as they drive research and advocate for policies that improve outcomes for the rare cancer community.  
URL:https://rarediseases.org/event/rare-cancer-coalition-at-asco/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260516T150000
DTEND;TZID=America/New_York:20260516T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000838-1778943600-1778950800@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/2026-05-16/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260506T163000
DTEND;TZID=America/New_York:20260506T173000
DTSTAMP:20260416T164454Z
CREATED:20260416T164454Z
LAST-MODIFIED:20260416T164454Z
UID:10001221-1778085000-1778088600@rarediseases.org
SUMMARY:National Leiomyosarcoma Foundation Patient/Caregiver Clinical Trial Perspectives - May 6th 4:30 PM ET
DESCRIPTION:
URL:https://rarediseases.org/event/national-leiomyosarcoma-foundation-patient-caregiver-clinical-trial-perspectives-may-6th-430-pm-et/
CATEGORIES:NORD Events,NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260502T130000
DTEND;TZID=America/New_York:20260502T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000941-1777726800-1777732200@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/2026-05-02/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260501
DTEND;VALUE=DATE:20260504
DTSTAMP:20260226T204128Z
CREATED:20260226T204128Z
LAST-MODIFIED:20260226T204128Z
UID:10001179-1777593600-1777852799@rarediseases.org
SUMMARY:International Waldenstrom Macroglobulinemia Foundation ED Forum
DESCRIPTION:Join the International Waldenstrom Macroglobulinemia Foundation on May 1–3\, 2026\, in Columbus\, Ohio\, for IWMF’s cornerstone educational event! The IWMF Ed Forum brings together patients\, caregivers\, healthcare professionals\, and researchers for three days of learning\, sharing\, and meaningful connection at the Hilton Columbus Downtown. \nThe U.S. Educational Forum offers in-depth\, expert-led education on all aspects of Waldenstrom macroglobulinemia (WM)\, from diagnosis and treatment options to the latest research and future therapies. Attendees will experience a rich mix of educational presentations\, integrative wellness activities\, formal and informal networking opportunities\, and social events—creating space for both learning and meaningful connection within the WM community. \nLearn more and complete your registration below:\nhttps://na.eventscloud.com/website/90420/registration26/
URL:https://rarediseases.org/event/international-waldenstrom-macroglobulinemia-foundation-ed-forum/
CATEGORIES:NORD Member Event
END:VEVENT
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
END:VEVENT
BEGIN:VEVENT
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
END:VEVENT
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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