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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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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
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: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;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: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: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: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: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: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: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;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: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: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;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;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;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:20260704T130000
DTEND;TZID=America/New_York:20260704T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000943-1783170000-1783175400@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/2026-07-04/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260707T180000
DTEND;TZID=America/New_York:20260707T190000
DTSTAMP:20260630T154915Z
CREATED:20260630T154009Z
LAST-MODIFIED:20260630T154915Z
UID:10001240-1783447200-1783450800@rarediseases.org
SUMMARY:Students for Rare New Chapter Info Session - July
DESCRIPTION:Are you a collegiate student interested in starting a NORD Students for Rare chapter on campus? Come and learn more about the program and next steps during our New Chapter Info Session! Our July session will take place on July 7 at 6:00 p.m. ET. We look forward to seeing you there!\nRegister Here
URL:https://rarediseases.org/event/students-for-rare-new-chapter-info-session-july/
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/06/Students-for-Rare-Info-Session-Social-Graphic.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260709
DTEND;VALUE=DATE:20260710
DTSTAMP:20260630T125859Z
CREATED:20260630T125859Z
LAST-MODIFIED:20260630T125859Z
UID:10001238-1783555200-1783641599@rarediseases.org
SUMMARY:Support Calley Forbes Fundraising for NORD Running for Rare!
DESCRIPTION:*Win a 2026/ 2027 Membership to Salmon Falls Country Club Hollis\, ME \n$100 minimum donation per chance\n125 chances to win \nDonate June 11- July 9th\nWinner selected LIVE July 9th 8:00pm\nRiver Tap & Grill\n52 Golf Course Lane\, Hollis\, ME \nThank you\, Salmon Falls Country Club/ River Tap & Grill for your generous donation! \nSupport Calley Today!
URL:https://rarediseases.org/event/support-calley-forbes-fundraising-for-nord-running-for-rare/
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/06/Image-17-scaled-e1782824229236.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260709
DTEND;VALUE=DATE:20260712
DTSTAMP:20260601T191033Z
CREATED:20260529T175042Z
LAST-MODIFIED:20260601T191033Z
UID:10001232-1783555200-1783814399@rarediseases.org
SUMMARY:NNPDF Family Support and Medical Conference
DESCRIPTION:About the Conference\n\n\n\n\nMore about the event here: https://nnpdf.org/conf/ \nEach year\, the NNPDF community gathers for something truly special\, a chance to reconnect\, welcome new families\, and share the journey with people who genuinely understand life with Niemann-Pick disease. Our annual conference is filled with meaningful conversations\, lasting friendships\, and the kind of support that reminds you that you are not alone. Families leave feeling encouraged\, informed\, and deeply connected. \nLeading researchers and clinicians join us to share clinical updates while listening and learning from families. Together\, we are building hope\, strengthening our community\, and moving closer to better treatments and one day\, a cure.
URL:https://rarediseases.org/event/nnpdf-family-support-and-medical-conferencw/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260716
DTEND;VALUE=DATE:20260720
DTSTAMP:20260126T213036Z
CREATED:20260126T213036Z
LAST-MODIFIED:20260126T213036Z
UID:10001101-1784160000-1784505599@rarediseases.org
SUMMARY:National PKU Alliance’s “Living Our Best PKU Life” Community Conference
DESCRIPTION:You’re invited to attend National PKU Alliance’s “Living Our Best PKU Life” Community Conference\, taking place Thursday\, July 16\, through Sunday\, July 19\, 2026\, in Lombard\, Illinois\, a suburb of Chicago. This family-friendly event\, held at the Westin Chicago Lombard\, is NPKUA’s largest PKU gathering in the country and invites anyone touched by PKU\, including individuals living with PKU\, families and caregivers\, clinicians\, researchers and industry partners. \nThe conference will feature engaging educational sessions\, a Kids Zone for children ages 12 and under\, including newborns and toddlers\, a Teen Zone for teens ages 13 to 17\, a Celebration Dinner and Dance Party\, and many opportunities to connect\, learn and have fun! \nEarly bird registration is available now through March 31 or until the conference sells out. Visit npkua.org/community-conference to learn more and register\, or contact conference@npkua.org with any questions. 
URL:https://rarediseases.org/event/national-pku-alliances-living-our-best-pku-life-community-conference/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260718T150000
DTEND;TZID=America/New_York:20260718T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000840-1784386800-1784394000@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/2026-07-18/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260719T170000
DTEND;TZID=America/New_York:20260719T220000
DTSTAMP:20260403T192110Z
CREATED:20260403T192110Z
LAST-MODIFIED:20260403T192110Z
UID:10001218-1784480400-1784498400@rarediseases.org
SUMMARY:The TBCK Foundation “Black Ties for Rare”
DESCRIPTION:The TBCK Foundation is excited to host “Black Ties for Rare”\, a family-friendly gala to honor and celebrate those affected by rare diseases. They warmly invite you to join on Sunday\, July 19\, from 5-10 PM at the Hyatt Regency Aurora\, CO for an evening of connection\, storytelling\, and community. \n  \n“Get ready for an unforgettable evening in person\, celebrating rare causes with style and heart. Dress up\, mingle\, and enjoy a night full of fun\, inspiration\, and good vibes. Whether you’re here to support or just have a great time\, this gala is the place to be. Don’t miss out on the chance to make memories and connections that matter! \nBook your stay in our room block to be close to the action and get a discount – https://www.hyatt.com/events/en-US/group-booking/DENHY/G-7FCR \nIf you are planning to attend both the Snowflakes in July TBCK Conference AND the Black Ties for Rare Gala 2026\, please visit the conference site for bundled tickets – https://www.eventbrite.com/e/tbck-conference-2026-snowflakes-in-july-tickets-1981484344013?aff=oddtdtcreator”
URL:https://rarediseases.org/event/the-tbck-foundation-black-ties-for-rare/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260722T130000
DTEND;TZID=America/New_York:20260722T140000
DTSTAMP:20260630T145243Z
CREATED:20260630T145143Z
LAST-MODIFIED:20260630T145243Z
UID:10001239-1784725200-1784728800@rarediseases.org
SUMMARY:Webinar: State Legislative Session Recap
DESCRIPTION:As state legislative sessions wind down\, join NORD’s Rare Action Network (RAN) for an end of session policy & advocacy wrap up. During this webinar\, we’ll discuss bills we tracked across the country\, celebrate our hard-fought advocacy wins\, and identify key opportunities for growth and improvement. We’ll also discuss potential areas of focus as we head towards 2027! \nRegister Here
URL:https://rarediseases.org/event/webinar-state-legislative-session-recap/
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/06/July-RAN-Webinar-State-Legislative-Session-Recap.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260723
DTEND;VALUE=DATE:20260726
DTSTAMP:20260226T155850Z
CREATED:20260226T155831Z
LAST-MODIFIED:20260226T155850Z
UID:10001173-1784764800-1785023999@rarediseases.org
SUMMARY:Hydrocephalus Association HA CONNECT
DESCRIPTION:The Hydrocephalus Association will host HA CONNECT\, its 19th Annual National Conference on Hydrocephalus\, in Indianapolis from July 23–25\, 2026. Families\, clinicians\, researchers\, and industry leaders will gather to connect\, learn\, and explore the latest advancements in hydrocephalus treatment\, management\, and everyday living. hydrocephalusconference.org
URL:https://rarediseases.org/event/hydrocephalus-association-ha-connect/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260801T130000
DTEND;TZID=America/New_York:20260801T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000944-1785589200-1785594600@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/2026-08-01/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260810T120000
DTEND;TZID=America/New_York:20260810T130000
DTSTAMP:20260630T155003Z
CREATED:20260630T155003Z
LAST-MODIFIED:20260630T155003Z
UID:10001241-1786363200-1786366800@rarediseases.org
SUMMARY:Students for Rare New Chapter Info Session - August
DESCRIPTION:Are you a collegiate student interested in starting a NORD Students for Rare chapter on campus? Come and learn more about the program and next steps during our New Chapter Info Session! Our August session will take place on August 10 at 12:00 p.m. ET. We look forward to seeing you there!\nRegister Here
URL:https://rarediseases.org/event/students-for-rare-new-chapter-info-session-august/
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/06/Students-for-Rare-Info-Session-Social-Graphic-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260815T150000
DTEND;TZID=America/New_York:20260815T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000841-1786806000-1786813200@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/2026-08-15/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260823
DTEND;VALUE=DATE:20260824
DTSTAMP:20260630T123624Z
CREATED:20260630T122919Z
LAST-MODIFIED:20260630T123624Z
UID:10001236-1787443200-1787529599@rarediseases.org
SUMMARY:ED for EDS4 Golf Tournament
DESCRIPTION:ED for EDS4 presents their 3rd Annual Golf Tournament to benefit the National Organization for Rare Disorders\, hosted at the Heritage Country Club in Charlton\, MA. Swing by after the tournament for dinner and a chance to win cash and prizes. \nClick here to enlarge the image.
URL:https://rarediseases.org/event/ed-for-eds4-golf-tournament/
ATTACH;FMTTYPE=image/jpeg:https://rarediseases.org/wp-content/uploads/2026/06/2026-ED4EDS-golf-flyer-v4-no-char.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260905T130000
DTEND;TZID=America/New_York:20260905T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000945-1788613200-1788618600@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/2026-09-05/
CATEGORIES:NORD Member Event
END:VEVENT
END:VCALENDAR