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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;TZID=America/New_York:20260617T130000
DTEND;TZID=America/New_York:20260617T140000
DTSTAMP:20260522T162133Z
CREATED:20260522T162133Z
LAST-MODIFIED:20260522T162133Z
UID:10001230-1781701200-1781704800@rarediseases.org
SUMMARY:Webinar: Effective Lawmaker Engagement for Rare Disease Advocates
DESCRIPTION:Building strong relationships with lawmakers is one of the most effective ways to advance rare disease policy and ensure the needs of our community are heard. The time between legislative sessions can be one of the most valuable opportunities to establish meaningful\, lasting relationships with elected officials and their staff. During this webinar\, we’ll teach you how to build and nourish relationships with your state lawmakers. We’ll also discuss strategies for engaging members of Congress ahead of the 2026 midterm elections when lawmakers are often spending more time in their home districts and seeking opportunities to connect with constituents.   \nRegister Here
URL:https://rarediseases.org/event/webinar-effective-lawmaker-engagement-for-rare-disease-advocates/
CATEGORIES:Advocate,For Clinicians and Researchers,For Patient Organizations,For Patients and Families,NORD Events,Rare Action Network Events
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:20260528T160000
DTEND;TZID=America/New_York:20260528T170000
DTSTAMP:20260325T190143Z
CREATED:20260324T153247Z
LAST-MODIFIED:20260325T190143Z
UID:10001198-1779984000-1779987600@rarediseases.org
SUMMARY:NORD Volunteer Meeting
DESCRIPTION:In this session\, our Community Engagement team will provide a comprehensive\, high-level overview of NORD’s volunteer programming and the strategic initiatives. 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 dedicated space for you to ask questions and collaboratively determine the most meaningful next steps for your unique volunteer journey. \nRegister Here
URL:https://rarediseases.org/event/nord-volunteer-meeting/2026-05-28/
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260526T130000
DTEND;TZID=America/New_York:20260526T140000
DTSTAMP:20260519T212128Z
CREATED:20260519T212128Z
LAST-MODIFIED:20260519T212128Z
UID:10001229-1779800400-1779804000@rarediseases.org
SUMMARY:Webinar: Copay Accumulator Programs
DESCRIPTION:Prescription drug out-of-pocket costs are expenses that patients pay for medical care that insurance does not cover\, and are one of the 9 issue areas assessed on NORD’s State Report Card. We assess five key protections that some states enact to limit patient out-of-pocket costs for prescription drugs\, and one of these protections are copay accumulator bans. Join us for a webinar focused on copay accumulator programs on Tuesday\, May 26\, 2026\, from 1pm to 2pm ET. We’ll teach you about copay accumulator programs and discuss how you can get involved in advocating for policies that reduce patient out-of-pocket expenses on prescription drugs to support better access to the therapies rare disease patients need. \nRegister Here
URL:https://rarediseases.org/event/webinar-copay-accumulator-programs/
CATEGORIES:Advocate,For Patients and Families,NORD Events,Rare Action Network Events
ATTACH;FMTTYPE=image/jpeg:https://rarediseases.org/wp-content/uploads/2026/05/Copay-webinar-graphic.jpg
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:20260515T090000
DTEND;TZID=America/New_York:20260515T130000
DTSTAMP:20260312T162850Z
CREATED:20260312T161916Z
LAST-MODIFIED:20260312T162850Z
UID:10001191-1778835600-1778850000@rarediseases.org
SUMMARY:Make Connections & Build Community at Living Rare\, Living Stronger Colorado
DESCRIPTION:The National Organization for Rare Disorders (NORD®) invites you to join us in Denver\, Colorado for a day of education and connection. Our Living Rare Forum is designed to help you navigate your life with a rare disease or as a rare caregiver. Each forum features expert speakers\, dynamic educational sessions\, and meaningful community-building opportunities. \nRegister Here \nEvent details: \nDate: Friday\, May 15\, 2026\nTime: 9:00 a.m. to 1:00 p.m.\nLocation: Auraria Campus\, Tivoli – Turnhalle\n900 Auraria Parkway\, Denver\, CO 80204
URL:https://rarediseases.org/event/make-connections-build-community-at-living-rare-living-stronger-colorado/
CATEGORIES:Advocate,For Clinicians and Researchers,For Patient Organizations,For Patients and Families,NORD Events,Patient Meetings,Rare Action Network Events
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/03/Screenshot-2026-03-12-111954.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260508T100000
DTEND;TZID=America/New_York:20260508T140000
DTSTAMP:20260312T162430Z
CREATED:20260312T161536Z
LAST-MODIFIED:20260312T162430Z
UID:10001190-1778234400-1778248800@rarediseases.org
SUMMARY:Make Connections & Build Community at Living Rare\, Living Stronger Arizona
DESCRIPTION:The National Organization for Rare Disorders (NORD®) invites you to join us in Phoenix\, Arizona for a day of education and connection. Our Living Rare Forum is designed to help you navigate your life with a rare disease or as a rare caregiver. Each forum features expert speakers\, dynamic educational sessions\, and meaningful community-building opportunities. \nRegister Here \nEvent details: \nDate: Friday\, May 8\, 2026\nTime: 10:00 a.m. to 2:00 p.m.\nLocation: Grand Canyon University\, Education Center Building 71\n2600 W. Camelback Road\nPhoenix\, AZ 85017
URL:https://rarediseases.org/event/make-connections-build-community-at-living-rare-living-stronger-arizona/
CATEGORIES:Advocate,For Patient Organizations,For Patients and Families,NORD Events,Patient Meetings,Rare Action Network Events
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/03/Screenshot-2026-03-12-111954.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260507T210000
DTEND;TZID=America/New_York:20260507T230000
DTSTAMP:20260429T040105Z
CREATED:20260429T040105Z
LAST-MODIFIED:20260429T040105Z
UID:10001225-1778187600-1778194800@rarediseases.org
SUMMARY:Rare Disease Community Meet Up
DESCRIPTION:Stop by Greenwood Brewing on Thursday\, May 7 between 6pm to 8pm for a rare disease community meet up! This is a wonderful chance to connect with one another over craft beer and finger foods in a relaxed setting. \nGreenwood Brewing will feature a special Zebra Hop brew for the meet up. Zebra Hop was created by Jonathan Kowalske of Component Brewing\, whose son\, Mac\, was diagnosed with Malan Syndrome right after they opened their brewery. Greenwood Brewing is generously donating a portion of proceeds from the event to benefit Eric Haapaoja’s Running for Rare fundraiser for NORD! Eric lives in Arizona and is running the Cocodona 250 with a charity bib to support NORD (yes\, you read that right\, he is running 250 miles from Black Canyon City to Flagstaff and raising money to fuel NORD’s mission). Eric’s family is personally impacted by rare disease\, and he is taking on the brutal Cocodona 250 to give back and help other families impacted by rare diseases. \nLet us know you are coming: https://www.surveymonkey.com/r/FTZJZ26 \n 
URL:https://rarediseases.org/event/rare-disease-community-meet-up/
LOCATION:Greenwood Brewing\, 922 N 5th St\, Phoenix\, AZ\, 85004\, United States
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/04/Benefiting-the-National-Organization-for-Rare-Disorders-NORD®.png
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;TZID=America/New_York:20260427T000000
DTEND;TZID=America/New_York:20260428T000000
DTSTAMP:20260226T134213Z
CREATED:20260226T134213Z
LAST-MODIFIED:20260226T134213Z
UID:10001090-1777248000-1777334400@rarediseases.org
SUMMARY:National Nephrogenic Diabetes Insipidus Awareness Day
DESCRIPTION:NDIAG- Nephrogenic Diabetes Insipidus Advocacy Group is recognizing the first of many National Nephrogenic Diabetes Insipidus Awareness Day’s on April 27th 2026. A big step forward in Awareness and Advocacy efforts for those living with this rare kidney disease\, NDI.
URL:https://rarediseases.org/event/national-nephrogenic-diabetes-insipidus-awareness-day/
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/01/40872.png
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
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260414
DTEND;VALUE=DATE:20260416
DTSTAMP:20260518T175440Z
CREATED:20251112T210556Z
LAST-MODIFIED:20260518T175440Z
UID:10001025-1776124800-1776297599@rarediseases.org
SUMMARY:NORD® Rare Disease Scientific Symposium
DESCRIPTION:Rare disease breakthroughs don’t happen in isolation. They require collaboration\, innovation\, and a united commitment to progress. That’s why the NORD® Rare Disease Scientific Symposium is bringing together a dynamic community of researchers\, clinicians\, industry leaders\, and advocates to spark the conversations and connections that drive science forward. \n  \nRegister Today: NORDScience.org
URL:https://rarediseases.org/event/nord-rare-disease-scientific-symposium/
CATEGORIES:NORD Events
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2025/11/NRD-2426-Symposium_CalendarListing-scaled.png
ORGANIZER;CN="NORD":MAILTO:events@rarediseases.org
END:VEVENT
END:VCALENDAR