BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//National Organization for Rare Disorders - ECPv6.17.5//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-ORIGINAL-URL:https://rarediseases.org
X-WR-CALDESC:Events for National Organization for Rare Disorders
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20250309T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20260308T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20261101T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20270314T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20271107T060000
END:STANDARD
END:VTIMEZONE
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;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:20260806T160000
DTEND;TZID=America/New_York:20260806T170000
DTSTAMP:20260803T222247Z
CREATED:20260803T222247Z
LAST-MODIFIED:20260803T222247Z
UID:10001254-1786032000-1786035600@rarediseases.org
SUMMARY:Adult Cystinosis Webinar: Beyond the Kidneys
DESCRIPTION:Adult Cystinosis Webinar: Beyond the Kidneys\n\nDate: Thursday\, August 6\n\nTime: 4:00 PM CT\n\nLocation: Zoom\n\n☆ Topics of Discussion ☆\n• Transitioning from pediatric to adult care\n• Gaps in adult cystinosis care\n• Psychosocial experiences and quality of life\n• Opportunities to improve long-term support and care
URL:https://rarediseases.org/event/adult-cystinosis-webinar-beyond-the-kidneys/
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:20260813T180000
DTEND;TZID=America/New_York:20260813T200000
DTSTAMP:20260724T162337Z
CREATED:20260724T162337Z
LAST-MODIFIED:20260724T162337Z
UID:10001249-1786644000-1786651200@rarediseases.org
SUMMARY:2026 NYC Marathon fundraiser
DESCRIPTION:Come on out and support Maeve! Raffles and 15% of drink sales benefit NORD.  \nRSVP Here
URL:https://rarediseases.org/event/2026-nyc-marathon-fundraiser/
LOCATION:East Point Bar\, 25 Avenue B\, New York\, NY\, 10009\, United States
CATEGORIES:Running for Rare
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/07/Maeves-Fundraiser-for-the-2026-New-York-City-marathon.png
ORGANIZER;CN="NORD":MAILTO:events@rarediseases.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260815
DTEND;VALUE=DATE:20260816
DTSTAMP:20260811T202527Z
CREATED:20260630T125859Z
LAST-MODIFIED:20260811T202527Z
UID:10001238-1786752000-1786838399@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;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;TZID=America/New_York:20260819T130000
DTEND;TZID=America/New_York:20260819T140000
DTSTAMP:20260729T192158Z
CREATED:20260728T172018Z
LAST-MODIFIED:20260729T192158Z
UID:10001250-1787144400-1787148000@rarediseases.org
SUMMARY:Webinar: Understanding Medical Nutrition and Insurance Coverage Challenges
DESCRIPTION:For many rare disease patients\, medical nutrition products are life-sustaining medicine\, yet insurance coverage for medical nutrition is inconsistent and varies widely based on a patient’s diagnosis\, insurance plan type\, and state of residence. During this webinar\, we’ll teach you about the meaning of “medically necessary nutrition products”\, how medical nutrition coverage challenges impact the rare disease community\, and ways you can advocate for improved medical nutrition coverage in your state and at the federal level. \nRegister
URL:https://rarediseases.org/event/understanding-medical-nutrition-and-insurance-coverage-challenges/
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/07/8-19-26-RAN-Webinar.png
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:20260827T150000
DTEND;TZID=America/New_York:20260827T160000
DTSTAMP:20260729T190424Z
CREATED:20260709T135344Z
LAST-MODIFIED:20260729T190424Z
UID:10001243-1787842800-1787846400@rarediseases.org
SUMMARY:Webinar: Innovative Approaches to Improving Your Rare Disease Care
DESCRIPTION:In an era of scientific and technological advances\, rare disease care is changing every day. Join us for a robust panel discussion diving into different approaches to navigate and improve your rare care throughout each step of your journey. \nRegister
URL:https://rarediseases.org/event/living-rare-living-stronger-summer-webinar-series-2/
END:VEVENT
END:VCALENDAR