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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;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:20260730T150000
DTEND;TZID=America/New_York:20260730T160000
DTSTAMP:20260709T135108Z
CREATED:20260709T135108Z
LAST-MODIFIED:20260709T135108Z
UID:10001242-1785423600-1785427200@rarediseases.org
SUMMARY:Living Rare\, Living Stronger® Summer Webinar Series
DESCRIPTION:Can’t make it to an in-person event? The National Organization for Rare Disorders (NORD®) is bringing the community straight to your screen! Registration is now officially open for the FREE Living Rare\, Living Stronger® Summer Webinar Series\, designed specifically for patients\, families\, and caregivers. \nJoin us for candid conversations\, essential education\, and community-building. Here is what we are diving into this July: \nThursday\, 7/30 @ 3:00 p.m. ET | “Overcoming Insurance Barriers” \nRegister
URL:https://rarediseases.org/event/living-rare-living-stronger-summer-webinar-series/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260730T160000
DTEND;TZID=America/New_York:20260730T170000
DTSTAMP:20260702T174719Z
CREATED:20260702T174604Z
LAST-MODIFIED:20260702T174719Z
UID:10001199-1785427200-1785430800@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-2/
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:20260801
DTEND;VALUE=DATE:20260802
DTSTAMP:20260710T122628Z
CREATED:20260630T125859Z
LAST-MODIFIED:20260710T122628Z
UID:10001238-1785542400-1785628799@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: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:20260827T150000
DTEND;TZID=America/New_York:20260827T160000
DTSTAMP:20260709T135344Z
CREATED:20260709T135344Z
LAST-MODIFIED:20260709T135344Z
UID:10001243-1787842800-1787846400@rarediseases.org
SUMMARY:Living Rare\, Living Stronger® Summer Webinar Series
DESCRIPTION:Can’t make it to an in-person event? The National Organization for Rare Disorders (NORD®) is bringing the community straight to your screen! Registration is now officially open for the FREE Living Rare\, Living Stronger® Summer Webinar Series\, designed specifically for patients\, families\, and caregivers. \nJoin us for candid conversations\, essential education\, and community-building. Here is what we are diving into this August: \nThursday\, 8/27 @ 3:00 PM ET | “Innovative Approaches to Improving Your Rare Disease Care” \nRegister
URL:https://rarediseases.org/event/living-rare-living-stronger-summer-webinar-series-2/
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
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260913
DTEND;VALUE=DATE:20260914
DTSTAMP:20260630T123933Z
CREATED:20260630T123933Z
LAST-MODIFIED:20260630T123933Z
UID:10001237-1789257600-1789343999@rarediseases.org
SUMMARY:ED for EDS4 Poker Run
DESCRIPTION:ED for EDS4 presents its 1st Annual Poker Run on Sunday\, September 13 in Charlton\, MA. \nClick here to enlarge the image.
URL:https://rarediseases.org/event/ed-for-eds4-poker-run/
ATTACH;FMTTYPE=image/jpeg:https://rarediseases.org/wp-content/uploads/2026/06/Poker-Run-.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260918
DTEND;VALUE=DATE:20260920
DTSTAMP:20260601T195634Z
CREATED:20260601T195634Z
LAST-MODIFIED:20260601T195634Z
UID:10001233-1789689600-1789862399@rarediseases.org
SUMMARY:2026 MSD Virtual Summit
DESCRIPTION:Register today for the 2026 MSD Virtual Summit! This FREE\, two-day\, online gathering will bring together researchers\, clinicians\, families\, advocates\, and partners from around the world. Through shared knowledge\, lived experience\, and innovative efforts\, we move closer to better care and future therapies for Multiple Sulfatase Deficiency. \nIn the coming weeks\, we will update this page with more details on the full schedule\, confirmed speakers\, and more for this two-day Virtual Summit. \nThe program will center around core themes highlighted below: areas where collaboration among clinicians\, researchers\, families\, advocates and partners is driving real progress. Because\, in partnership\, we thrive. \nTogether\, we can build a future where everyone affected by MSD can live without limitation.
URL:https://rarediseases.org/event/2026-msd-virtual-summit/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260919
DTEND;VALUE=DATE:20260920
DTSTAMP:20260608T143929Z
CREATED:20260608T143929Z
LAST-MODIFIED:20260608T143929Z
UID:10001235-1789776000-1789862399@rarediseases.org
SUMMARY:Ramsay Hunt Syndrome Foundation Face Forward 2026 Patient Support Summit
DESCRIPTION:On September 19\, the 2026 Face Forward Patient Support Summit will bring together patients\, caregivers\, clinicians and advocates for an inspiring day of connection\, education\, and empowerment. \nThis event will feature: \n\n\nExpert medical presentations on the latest RHS research and treatment advances \n\n\nInteractive workshops and wellness sessions for patients and caregivers \n\n\nNetworking and advocacy opportunities to strengthen our growing community \n\n\n​​​​​ \n\n\n\nRegister\n\n\nFace Forward 2026: RHSF Patient Support Summit\nSeptember 19\, 2026\n\n\nEarly Bird Rate: $135 (until June 15th)Regular Rate: $160 \n​ \nLocation: \nFriday Center\, 100 Friday Center Dr \nChapel Hill\, NC 27517 \n​ \nDate and time: Sat\, Sep 19\, 2026 8:00 AM – 4:00 PM \nOrganizer: Ramsay Hunt Syndrome Foundation \n2026 Face Forward Summit
URL:https://rarediseases.org/event/ramsay-hunt-syndrome-foundation-face-forward-2026-patient-support-summit/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260919T150000
DTEND;TZID=America/New_York:20260919T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000842-1789830000-1789837200@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/2026-09-19/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260919T180000
DTEND;TZID=America/New_York:20260919T180000
DTSTAMP:20260715T154317Z
CREATED:20260715T154044Z
LAST-MODIFIED:20260715T154317Z
UID:10001245-1789840800-1789840800@rarediseases.org
SUMMARY:Left\, Right\, Center Fundraising Tournament
DESCRIPTION:Join this fun New England Patriots-themed fundraiser hosted by Julia Maderia in East Bridgewater\, MA. Support Julia’s fundraising efforts for NORD Running for Rare. \nClick here to read more and RSVP. \nClick here to enlarge the image.
URL:https://rarediseases.org/event/left-right-center-fundraising-tournament/
LOCATION:East Bridgewater Commercial Club\, 1 Neilson Ave\, East Bridgewater\, MA\, 02333\, United States
CATEGORIES:Running for Rare
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/07/IMG_6791-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260925
DTEND;VALUE=DATE:20260927
DTSTAMP:20260717T175154Z
CREATED:20260717T175154Z
LAST-MODIFIED:20260717T175154Z
UID:10001246-1790294400-1790467199@rarediseases.org
SUMMARY:2026 Wilson Disease Association Annual Conference
DESCRIPTION:Registration is now open for the 2026 WDA Annual Conference\, taking place September 25–26 in Chicago. \nCo-hosted by Northwestern University Feinberg School of Medicine’s Wilson Disease Center of Excellence and the Wilson Disease Association\, the conference will bring together healthcare professionals\, researchers\, advocates\, industry partners\, patients\, and caregivers from across the Wilson disease community. \nThe event features a dual-track agenda\, including a physician education program for healthcare professionals and dedicated programming for patients and families. \nJoin us for two days of education\, networking\, collaboration\, and community-building with leaders across the Wilson disease field. \nEarly-bird registration is available through August 16. \nView the full agenda\, registration details\, sponsorship opportunities\, travel assistance information\, and hotel information at: https://wilsondisease.org/get-involved/events/annual-conference/ \n#WilsonDisease #RareDisease #MedicalEducation #ClinicalResearch #PatientAdvocacy
URL:https://rarediseases.org/event/2026-wilson-disease-association-annual-conference/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261001T160000
DTEND;TZID=America/New_York:20261001T200000
DTSTAMP:20260710T163556Z
CREATED:20260710T163556Z
LAST-MODIFIED:20260710T163556Z
UID:10001244-1790870400-1790884800@rarediseases.org
SUMMARY:2nd Annual Oktoberfest - Raise a Stein for a Cause
DESCRIPTION:Join community members for an evening of celebration and purpose at our Oktoberfest-themed happy hour! Enjoy authentic German beer\, delicious food\, live music\, and exciting raffle prizes – all while supporting a powerful cause. Last year’s inaugural event raised over $50\,000 for the National Organization for Rare Disorders (NORD). \nThe Benassi family\, alongside business partners and friends\, created F-U Rare Disorders Oktoberfest as a way to give back while having some fun\, gathering the community to raise awareness and support for those impacted by rare disorders. \nClick here to enlarge the image.
URL:https://rarediseases.org/event/2nd-annual-oktoberfest-raise-a-stein-for-a-cause/
LOCATION:Buffalo Creek Brewing\, Long Grove\, IL\, 360 Historical Lane\, Long Grove\, IL\, 60047\, United States
ATTACH;FMTTYPE=image/jpeg:https://rarediseases.org/wp-content/uploads/2026/07/2026-Oktoberfest-for-NORD-flier.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261003T130000
DTEND;TZID=America/New_York:20261003T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000946-1791032400-1791037800@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/2026-10-03/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261012
DTEND;VALUE=DATE:20261017
DTSTAMP:20260226T142043Z
CREATED:20260226T142043Z
LAST-MODIFIED:20260226T142043Z
UID:10001169-1791763200-1792195199@rarediseases.org
SUMMARY:Cure HHT International Scientific Conference
DESCRIPTION:Join Cure HHT in Cape Cod\, October 12-16\, 2026\, as breakthroughs set sail at the 16th HHT International Scientific Conference. Together\, we’ll explore the latest advances in HHT research\, diagnosis\, and care — connecting scientists\, clinicians\, and innovators from across the globe. Engage in bold discussions\, share discoveries\, and help shape the next era of HHT science.
URL:https://rarediseases.org/event/cure-hht-international-scientific-conference/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261017T150000
DTEND;TZID=America/New_York:20261017T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000843-1792249200-1792256400@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/2026-10-17/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261025
DTEND;VALUE=DATE:20261028
DTSTAMP:20260511T205056Z
CREATED:20260511T204030Z
LAST-MODIFIED:20260511T205056Z
UID:10001227-1792886400-1793145599@rarediseases.org
SUMMARY:2026 NORD Rare Diseases & Orphan Products Breakthrough Summit
DESCRIPTION:The 2026 NORD Rare Diseases + Orphan Products Breakthrough Summit will welcome more than 900 key stakeholders in the rare disease community to Washington\, D.C. on October 25-27\, 2026. This event brings together thought leaders in industry\, academia\, patient advocacy\, and government for the latest updates on rare disease diagnosis\, drug development\, research\, patient engagement\, public policy and market accessibility of orphan products. \n  \nStay Connected: NORDSummit.org
URL:https://rarediseases.org/event/2026-nord-rare-diseases-orphan-products-breakthrough-summit/
LOCATION:Grand Hyatt in Washington\, D.C.\, 1000 H Street NW\, Washington\, DC\, United States
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/05/NEW-Summit-Logo-FNL-01.png
ORGANIZER;CN="NORD":MAILTO:events@rarediseases.org
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: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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261205T130000
DTEND;TZID=America/New_York:20261205T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000948-1796475600-1796481000@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/2026-12-05/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261219T150000
DTEND;TZID=America/New_York:20261219T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000845-1797692400-1797699600@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/2026-12-19/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20270102T130000
DTEND;TZID=America/New_York:20270102T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000949-1798894800-1798900200@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/2027-01-02/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20270116T150000
DTEND;TZID=America/New_York:20270116T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000846-1800111600-1800118800@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/2027-01-16/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20270124T080000
DTEND;TZID=America/New_York:20270124T170000
DTSTAMP:20260207T163102Z
CREATED:20260126T211212Z
LAST-MODIFIED:20260207T163102Z
UID:10001096-1800777600-1800810000@rarediseases.org
SUMMARY:Moebius Syndrome Awareness Day
DESCRIPTION:Moebius Syndrome Awareness Day is on January 24! \nMoebius syndrome is a rare\, neurological condition that impacts 2 to 20 per million births. The Moebius Syndrome Foundation invites everyone to learn more about Moebius syndrome and the resources offered by the Moebius Syndrome Foundation at www.moebiussyndrome.org. \nIt causes facial paralysis or weakness and can cause speech\, feeding and respiratory difficulties\, limb differences\, and other symptoms. It is a congenital\, non-progressive disorder that affects individuals from all walks of life. For over three decades\, the Moebius Syndrome Foundation has been leading the way advocating for awareness\, advocacy\, creating educational resources\, connecting people\, providing support services\, and funding critical research initiatives. \nGet Involved \nHelp them celebrate this event all month long in January by submitting your stories and photos. Please email materials to them at: social@moebiussyndrome.org. \nOur regional coordinators are hosting in-person events across the country! Celebrate by finding an event near you. \nYou can also participate and support Moebius Syndrome Awareness through social media by sharing your memories using the hashtags #MSAD2026 and #MoebiusSyndomeFoundation. \nLearn more about Moebius syndrome.
URL:https://rarediseases.org/event/jan-24-moebius-syndrome-awareness-day/2027-01-24/
CATEGORIES:NORD Member Event
END:VEVENT
END:VCALENDAR