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X-ORIGINAL-URL:https://rarediseases.org
X-WR-CALDESC:Events for National Organization for Rare Disorders
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TZID:America/New_York
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DTSTART:20250309T070000
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DTSTART:20251102T060000
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DTSTART:20260308T070000
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DTSTART:20261101T060000
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DTSTART:20270314T070000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260923
DTEND;VALUE=DATE:20260924
DTSTAMP:20260919T034219Z
CREATED:20260919T034219Z
LAST-MODIFIED:20260919T034219Z
UID:10001269-1790121600-1790207999@rarediseases.org
SUMMARY:United Against Ataxia Hill Day
DESCRIPTION:Join the National Ataxia Foundation and Friedreich’s Ataxia Research Alliance in advocating for Ataxia and rare disease related policy issues during their annual United Against Ataxia Hill Day on September 23\, 2026! Advocates will have the opportunity to attend virtual meetings with members of Congress and their staffers to tell their stories and relay the importance of supporting NAF’s legislative initiatives. \nThis is a fully virtual event\, and you can expect to join 2-5 meetings throughout the day. Training will be provided before the event. Registration opens on August 10th. Reach out to courtney@ataxia.org or berkley.bell@curefa.org with any questions about this event!
URL:https://rarediseases.org/event/united-against-ataxia-hill-day/
CATEGORIES:NORD Member Event
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:20261001T120000
DTEND;TZID=America/New_York:20261003T143000
DTSTAMP:20261001T133752Z
CREATED:20261001T133752Z
LAST-MODIFIED:20261001T133752Z
UID:10001399-1790856000-1791037800@rarediseases.org
SUMMARY:Living Rare Living Stronger - Virtual Spanish Session October 3rd
DESCRIPTION:NORD’s free virtual event for Spanish-speaking rare disease patients and families (October 3)\n\nRegistration is now open for NORD’s first #LivingRare virtual event entirely in Spanish!  https://bit.ly/4i6JPzG\n\n\n\nJoin us Saturday\, Oct. 3\, from noon to 2:30 p.m. ET on Zoom for a free event bringing Spanish-speaking rare disease patients\, families\, and caregivers together for education and community connection.\n\n\n\nAttendees can expect expert-led information on genetics and navigating next steps after a rare disease diagnosis\, along with opportunities to connect with other patients and families.\n\n\n\nProgramming will be in Spanish\, with simultaneous live interpretation available in English.\n\n\nRegister today: https://bit.ly/4i6JPzG\n\n\nPlease share this with someone in your community who may benefit from this event.
URL:https://rarediseases.org/event/living-rare-living-stronger-virtual-spanish-session-october-3rd/
CATEGORIES:NORD Events,NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261001T160000
DTEND;TZID=America/New_York:20261001T200000
DTSTAMP:20260925T121103Z
CREATED:20260710T163556Z
LAST-MODIFIED:20260925T121103Z
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/png:https://rarediseases.org/wp-content/uploads/2026/07/image.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261003T120000
DTEND;TZID=America/New_York:20261003T143000
DTSTAMP:20261001T134248Z
CREATED:20261001T134248Z
LAST-MODIFIED:20261001T134248Z
UID:10001400-1791028800-1791037800@rarediseases.org
SUMMARY:Living Rare Living Stronger - Sesión virtual de español 3 de octubre
DESCRIPTION:Ya está abierta la inscripción para el primer evento virtual #LivingRare de NORD\, completamente en español! 🎉 https://bit.ly/4i6JPzG \nÚnase a nosotros el sábado 3 de octubre\, del mediodía a las 2:30 pm ET en Zoom para un evento gratuito que reúne a pacientes de enfermedades raras de habla hispana\, familias y cuidadores para educación y conexión comunitaria. \nLos asistentes pueden esperar información dirigida por expertos sobre genética y los próximos pasos después de un diagnóstico de enfermedad rara\, junto con oportunidades para conectarse con otros pacientes y familias. \nLa programación será en español\, con interpretación simultánea en inglés.\nRegístrese hoy: https://bit.ly/4i6JPzG \nPor favor\, comparte esto con alguien de tu comunidad que pueda beneficiarse de este evento.
URL:https://rarediseases.org/event/living-rare-living-stronger-sesion-virtual-de-espanol-3-de-octubre/
CATEGORIES:NORD Events,NORD Member Event
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;TZID=America/New_York:20261003T130000
DTEND;TZID=America/New_York:20261003T143000
DTSTAMP:20260922T155902Z
CREATED:20260922T155902Z
LAST-MODIFIED:20260922T155902Z
UID:10001334-1791032400-1791037800@rarediseases.org
SUMMARY:Pericarditis Alliance - Shares From the Collective hosted by Lisa
DESCRIPTION:Pericarditis Alliance is so pleased to offer three new monthly virtual support groups for patients and their families to check in\, connect\, and learn from each other. Registration is open for one month at a time and will be open for each group by the Friday after the previous meeting. Register for each group through the calendar below. \nPericarditis Under 30 hosted by Alexa – A group to bring much needed targeted support for the younger demographic who are hit with this disease at a time when they are still trying to figure themselves out and making plans for their future — often being forced to pivot in their career and life goals. First Sunday of the month at 12pm ET. Open to pericarditis patients under 30\, and their caregivers. \nShares From the Collective hosted by Lisa – Where participants will have the option to follow different themes and topics for a few sessions at a time while bringing their own lived experiences to the discussion to learn from and support each other. First Saturday of the month at 1pm ET. Open to all pericarditis patients and caregivers. \nPericarditis International hosted by Andy from England\, allowing us to support more patients in Europe and nearby time zones. Andy says upon getting pericarditis\, his biggest battle was fighting himself. His sessions will have a large focus on the psychological and mental health aspects of pericarditis. Second Sunday of the month at 4:30pm BST\, 11:30am ET. Open to all pericarditis patients and caregivers. \nPericarditis Speaker Series with Rachel – A professional speaker series including presentations and discussions by special guests with expertise in pericarditis lifestyle and health management\, clinical trials\, and more. These are on Mondays with dates and times TBD. Open to all pericarditis patients and caregivers. \nSupport Groups | Pericarditis Alliance
URL:https://rarediseases.org/event/pericarditis-alliance-shares-from-the-collective-hosted-by-lisa/2026-10-03/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261003T150000
DTEND;TZID=America/New_York:20261003T180000
DTSTAMP:20260923T123826Z
CREATED:20260923T123633Z
LAST-MODIFIED:20260923T123826Z
UID:10001394-1791039600-1791050400@rarediseases.org
SUMMARY:Pints for a Purpose
DESCRIPTION:Click to enlarge image \nJoin in a fun fall afternoon at Great American Beer Hall on October 3 from 3–6 PM! Come hang out\, grab a drink\, and help celebrate Bridget’s TCS New York City Marathon journey while raising money for NORD. We’ll have a signature drink\, raffles\, food\, beer\, and plenty of good times. Tickets are $20\, with proceeds going toward my fundraiser. Bring your friends\, come for a drink (or a few!)\, and spend the afternoon with us! \nTickets are $20 \nRSVP Here
URL:https://rarediseases.org/event/pints-for-a-purpose/
LOCATION:Great American Beer Hall\, Medford\, MA
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/09/Fundraiser-Bridget-Joyce.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261004T120000
DTEND;TZID=America/New_York:20261004T133000
DTSTAMP:20260922T155610Z
CREATED:20260922T155610Z
LAST-MODIFIED:20260922T155610Z
UID:10001274-1791115200-1791120600@rarediseases.org
SUMMARY:Pericarditis Alliance Support Groups - Pericarditis Under 30 hosted by Alexa
DESCRIPTION:Pericarditis Alliance is so pleased to offer three new monthly virtual support groups for patients and their families to check in\, connect\, and learn from each other. Registration is open for one month at a time and will be open for each group by the Friday after the previous meeting. Register for each group through the calendar below. \nPericarditis Under 30 hosted by Alexa – A group to bring much needed targeted support for the younger demographic who are hit with this disease at a time when they are still trying to figure themselves out and making plans for their future — often being forced to pivot in their career and life goals. First Sunday of the month at 12pm ET. Open to pericarditis patients under 30\, and their caregivers. \nSupport Groups | Pericarditis Alliance
URL:https://rarediseases.org/event/pericarditis-alliance-support-groups-pericarditis-under-30-hosted-by-alexa/2026-10-04/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261005T110000
DTEND;TZID=America/New_York:20261005T121500
DTSTAMP:20260926T062027Z
CREATED:20260926T062027Z
LAST-MODIFIED:20260926T062027Z
UID:10001396-1791198000-1791202500@rarediseases.org
SUMMARY:Scientific Seminar - International Pemphigus and Pemphigoid Foundation
DESCRIPTION:Join the International Pemphigus and Pemphigoid Foundation on Monday\, October 5th at 11:00 AM – 12:15 PM EST/ Central European Time: 5:00 PM – 6:15 PM (17:00 – 18:15) for our next Scientific Seminar. In close cooperation with Drs. Ralf Ludwig & Katja Bieber of the Lübeck Institute for Experimental Dermatology at the University of Lübeck\, the IPPF Scientific Seminar Series is a scientific educational program with experts from various international institutions who present on their scientific findings on pemphigus and pemphigoid. Content will highlight recently published and/or unpublished data in both basic and translational research. For more information and to register visit: https://zoom.us/webinar/register/WN_U1BB_vilSOGNrZRq9drWiw \n 
URL:https://rarediseases.org/event/scientific-seminar-international-pemphigus-and-pemphigoid-foundation/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261009
DTEND;VALUE=DATE:20261011
DTSTAMP:20260921T214749Z
CREATED:20260921T214749Z
LAST-MODIFIED:20260921T214749Z
UID:10001272-1791504000-1791676799@rarediseases.org
SUMMARY:CMTA 2026 Patient and Research Summit
DESCRIPTION:The Charcot-Marie-Tooth Association (CMTA) will host its 2026 Patient and Research Summit on October 9-10\, 2026\, at the Grand Bay Hotel San Francisco\, 223 Twin Dolphin Dr.\, Redwood City\, CA 94065. \nThe two-day event brings together people living with Charcot-Marie-Tooth disease (CMT)\, caregivers\, researchers\, clinicians\, and industry partners for education\, research updates\, and community connection. Attendees will learn about the latest developments in CMT research\, clinical trials\, treatment development\, and disease management through presentations from leading experts and opportunities to engage with the CMT community. \nWhether newly diagnosed or living with CMT for years\, participants will gain practical information\, hear directly from researchers and clinicians\, and connect with others who share similar experiences. \nEvent: CMTA 2026 Patient and Research Summit\nDates: October 9-10\, 2026\nLocation: Grand Bay Hotel San Francisco\, 223 Twin Dolphin Dr.\, Redwood City\, CA 94065\nOrganizer: Charcot-Marie-Tooth Association (CMTA)\nRegistration: Visit https://www.cmtausa.org/summit for registration information and event details.
URL:https://rarediseases.org/event/cmta-2026-patient-and-research-summit/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261009
DTEND;VALUE=DATE:20261012
DTSTAMP:20260925T134612Z
CREATED:20260921T215813Z
LAST-MODIFIED:20260925T134612Z
UID:10001273-1791504000-1791763199@rarediseases.org
SUMMARY:Charcot-Marie-Tooth Association (CMTA) 2026 Patient & Research Summit
DESCRIPTION:The Charcot-Marie-Tooth Association (CMTA) 2026 Patient & Research Summit brings together people living with Charcot-Marie-Tooth disease (CMT)\, caregivers\, researchers\, clinicians\, and industry partners for two days of education and community. \nWhether you are newly diagnosed or have lived with CMT for years\, the Summit offers practical information and opportunities to engage with the CMT community. \nLearn more and register at cmtausa.org/summit.
URL:https://rarediseases.org/event/charcot-marie-tooth-association-cmta-2026-patient-research-summit/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261010
DTEND;VALUE=DATE:20261011
DTSTAMP:20260925T135323Z
CREATED:20260925T135323Z
LAST-MODIFIED:20260925T135323Z
UID:10001395-1791590400-1791676799@rarediseases.org
SUMMARY:The Pulmonary Hypertension Wellness Expo
DESCRIPTION:The Pulmonary Hypertension Wellness Expo is PHA’s newest free\, educational event for the PH community. The PH Wellness Expo is set for Saturday\, Oct. 10\, from 11 a.m. to 3 p.m. PDT in San Francisco. \nAttend the PH Wellness Expo to learn more about PH and it’s associated conditions; access free PH-focused resources from local\, regional and national organizations; learn from PH experts in interactive demonstrations and presentations; and connect with the regional PH community. \nThe event is open to anyone affected by or interested in learning more about pulmonary hypertension. All ages as welcome; we will have Family Fun Zone for crafts and activities for all members of your family. Free parking is available onsite and lunch in included in registration. Online registration is available August 11 through October 6: https://phassociation.org/events-and-resources/pha-events/wellness-expo/
URL:https://rarediseases.org/event/the-pulmonary-hypertension-wellness-expo/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261010T160000
DTEND;TZID=America/New_York:20261010T180000
DTSTAMP:20260921T152159Z
CREATED:20260921T152159Z
LAST-MODIFIED:20260921T152159Z
UID:10001271-1791648000-1791655200@rarediseases.org
SUMMARY:IPPF Pacific Northwest Support Group Meeting
DESCRIPTION:Join the IPPF for their next IN PERSON Pacific Northwest Support Group Meeting on October 10th at the Seattle Public Library. Living with pemphigus or pemphigoid is hard enough\, but when you feel alone it seems even harder. There’s something special about connecting with people who really know what you’re going through. You are not alone! This is a free meeting to attend. This meeting will be an exciting opportunity to connect with others in our community. \nFor more information and to register: \n\nSaturday\, October 10\, 2026 • 1:15pm – 3:15pm PST\n\n\nSeattle Public Library – Beacon Hill Branch\, 2821 Beacon Avenue South\, Seattle\, WA\n\nhttps://fundraise.pemphigus.org/group_pnw_october_2026
URL:https://rarediseases.org/event/ippf-pacific-northwest-support-group-meeting/
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:20261014T183000
DTEND;TZID=America/New_York:20261014T203000
DTSTAMP:20260926T071333Z
CREATED:20260926T071333Z
LAST-MODIFIED:20260926T071333Z
UID:10001398-1792002600-1792009800@rarediseases.org
SUMMARY:IPPFTri-State New York Virtual Support Group
DESCRIPTION:Join the IPPF for their next Tri-State New York Virtual Support Group on Wednesday October 14\, 2026 • 6:30 pm – 8:30 pm (EST). Living with pemphigus or pemphigoid is hard enough\, but when you feel alone it seems even harder. You are not alone. Visit https://fundraise.pemphigus.org/groups_tristate_ny_october_2026 for more information and to register.
URL:https://rarediseases.org/event/ippftri-state-new-york-virtual-support-group/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261015
DTEND;VALUE=DATE:20261018
DTSTAMP:20260919T032424Z
CREATED:20260919T031735Z
LAST-MODIFIED:20260919T032424Z
UID:10001266-1792022400-1792281599@rarediseases.org
SUMMARY:Sickle Cell Disease Association of America at the 54th Annual National Convention
DESCRIPTION:The Sickle Cell Disease Association of America Inc.\, a national nonprofit organization that advocates for people affected by sickle cell disease\, will hold its 54th annual national convention Thursday\, Oct. 15\, through Saturday\, Oct. 17\, at the Embassy Suites by Hilton in Concord\, North Carolina. \nYou are invited to join the Sickle Cell Disease Association of America at the 54th Annual National Convention\, October 15-17\, at Embassy Suites by Hilton\, Charlotte Concord Golf Resort & Spa in Concord\, North Carolina!  Click here for more information about hotel availability. \nIf you need help finding accommodations\, please contact convention@sicklecelldisease.org. \n“You may know that the iconic dogwood is North Carolina’s state flower\, but did you know that it is also a symbol of hope and new beginnings? Our 54th Annual National Convention theme pays tribute to our host state and recognizes our community’s transition into a new era of sickle cell care. \nView the agenda at a glance for a preview of their 2026 programming!”
URL:https://rarediseases.org/event/sickle-cell-disease-association-of-america-at-the-54th-annual-national-convention/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261015
DTEND;VALUE=DATE:20261018
DTSTAMP:20260919T025646Z
CREATED:20260919T025646Z
LAST-MODIFIED:20260919T025646Z
UID:10001265-1792022400-1792281599@rarediseases.org
SUMMARY:2026RNDS October 15 – 17 2026\, Hybrid Conference
DESCRIPTION:“Siegel Rare Neuroimmune Association \nA three-day hybrid (in-person and online) educational event for those with acute disseminated encephalomyelitis (ADEM)\, acute flaccid myelitis (AFM)\, MOG antibody disease (MOGAD)\, neuromyelitis optica spectrum disorder (NMOSD)\, optic neuritis (ON)\, and transverse myelitis (TM)\, as well as their families\, care partners\, and medical professionals. \n\n\n\nAbout\n\n\n\n\nThe RNDS was created to bring together individuals diagnosed with rare neuroimmune disorders and clinicians and researchers that focus on these disorders. This event is the only one of its kind. \nOn October 15 – 17\, 2026\, we will host a hybrid event—participants can choose to attend either in-person\, virtually via online streaming\, or partly in-person and partly online. \nWe remain committed to hosting a conference that empowers our rare disease community to become better advocates for themselves and provides valuable resources to keep learning about these rare conditions.”
URL:https://rarediseases.org/event/2026rnds-october-15-17-2026-hybrid-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;TZID=America/New_York:20261022T130000
DTEND;TZID=America/New_York:20261022T140000
DTSTAMP:20260903T170149Z
CREATED:20260902T204639Z
LAST-MODIFIED:20260903T170149Z
UID:10001260-1792674000-1792677600@rarediseases.org
SUMMARY:Webinar: Make an Impact with Your State’s Rare Disease Advisory Council
DESCRIPTION:Rare Disease Advisory Councils (RDACs) give people impacted by rare diseases a meaningful voice in state government\, and an opportunity to help shape policies and programs impacting the rare disease community. During this webinar\, we’ll teach you how RDACs operate\, and the different ways that advocates can advance and strengthen the work of a council. \nRegister 
URL:https://rarediseases.org/event/make-an-impact-with-your-states-rare-disease-advisory-council/
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/09/Oct-2026-RAN-Webinar.png
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:20261029T160000
DTEND;TZID=America/New_York:20261029T170000
DTSTAMP:20261007T172114Z
CREATED:20260702T174604Z
LAST-MODIFIED:20261007T172114Z
UID:10001199-1793289600-1793293200@rarediseases.org
SUMMARY:NORD Volunteer Information Session
DESCRIPTION:In this session\, NORD staff will provide an overview of NORD’s volunteer programming. 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 space for you to ask questions and determine the next steps for your 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;TZID=America/New_York:20261029T180000
DTEND;TZID=America/New_York:20261029T210000
DTSTAMP:20260919T033856Z
CREATED:20260919T033856Z
LAST-MODIFIED:20260919T033856Z
UID:10001268-1793296800-1793307600@rarediseases.org
SUMMARY:10th Annual Food Fight for Scleroderma
DESCRIPTION:10th Annual Food Fight for Scleroderma \nDate: Thursday\, October 29\, 2026\nTime: 6:00–9:00 p.m. | First Bite VIP begins at 5:30 p.m.\nLocation: Mile High Station\, 2027 W. Colfax Ave.\, Denver\, CO 80204 \nJoin the National Scleroderma Foundation Rocky Mountain Chapter for the 10th Annual Food Fight for Scleroderma\, Denver’s signature culinary event supporting people affected by this rare autoimmune disease. Guests will enjoy signature bites and drinks from Denver-area chefs and culinary competitors\, vote alongside celebrity judges\, and hear from members of the scleroderma community. \nProceeds support patient education\, emotional support and resources\, disease awareness\, and research toward better treatments and a cure for scleroderma. \nLearn more and purchase tickets:\nhttp://www.foodfightdenver.com \nIf you would like more details or to sponsor the 10th Anniversary Food Fight\, please contact Amy Valentine at avalentine@scleroderma.org
URL:https://rarediseases.org/event/10th-annual-food-fight-for-scleroderma/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261101
DTEND;VALUE=DATE:20261102
DTSTAMP:20261001T141850Z
CREATED:20261001T141850Z
LAST-MODIFIED:20261001T141850Z
UID:10001401-1793491200-1793577599@rarediseases.org
SUMMARY:Abbey Meyers Khushi Bridging Rare Awards & Gala 2026
DESCRIPTION:The Abbey Meyers Khushi Bridging Rare Awards & Gala 2026\, hosted by IndoUSrare\, is a fundraising gala dedicated to supporting our mission and creating greater opportunities for the rare disease community.\nEvery person who joins\, helps strengthen our community and supports the mission of IndoUSrare. \nHighlights of the evening:\nAbbey Meyers Khushi Bridging Rare Awards\nCelebrating individuals whose leadership\, advocacy and contributions are making a meaningful difference in the rare disease community.\n \n Exclusive Silent Auction\nExplore a curated selection of exciting items and experiences\, place your bids throughout the evening\, and take home something special—all while supporting the rare disease community.\n \n November 1\, 2026\nHylton Performing Arts Center\, Manassas\, Virginia
URL:https://rarediseases.org/event/abbey-meyers-khushi-bridging-rare-awards-gala-2026/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261101
DTEND;VALUE=DATE:20261102
DTSTAMP:20261001T180055Z
CREATED:20261001T180055Z
LAST-MODIFIED:20261001T180055Z
UID:10001402-1793491200-1793577599@rarediseases.org
SUMMARY:Join NORD’s Running for Rare Cheer Squad for the 2026 TCS NYC Marathon
DESCRIPTION:Make a difference and join NORD’s Running for Rare Cheer Squad at the 2026 TCS New York City Marathon! \nJoin NORD’s Running for Rare Cheer Squad and help bring energy\, encouragement\, and support to runners along the course. Your presence will help motivate NORD’s team and show the rare disease community that they are surrounded by a strong and supportive community. \nWhether you’re attending with family\, friends\, coworkers\, or a group\, this is a great opportunity to come together\, cheer on the team\, and make a difference. \nSign up today to join NORD’s Running for Rare Cheer Squad!
URL:https://rarediseases.org/event/join-nords-running-for-rare-cheer-squad-for-the-2026-tcs-nyc-marathon/
LOCATION:New York\, New York\, NY\, 10001\, United States
ATTACH;FMTTYPE=image/jpeg:https://rarediseases.org/wp-content/uploads/2026/10/image-1-scaled.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261106
DTEND;VALUE=DATE:20261107
DTSTAMP:20261005T160700Z
CREATED:20261005T160700Z
LAST-MODIFIED:20261005T160700Z
UID:10001406-1793923200-1794009599@rarediseases.org
SUMMARY:Submission Deadline! TANGO2 Research Foundation Grant Cycle
DESCRIPTION:TANGO2 Research Foundation  \nT2RF Grant Cycle 7 is OPEN!\nNow accepting Letters of Intent (LOIs) \nThe TANGO2 Research Foundation (T2RF) is now accepting LOIs for 2027 Research Grants\, supporting innovative seed and pilot research that advances our understanding of TANGO2 Deficiency Disorder (TDD). These grants are designed to help researchers test promising ideas\, establish feasibility\, refine methodologies\, and generate preliminary data needed to advance future\, larger-scale studies. We encourage researchers with innovative\, rigorous research ideas that can advance knowledge and discovery in TDD to consider applying. \n Award Details \n• Single-Institution: Up to $25\,000\n• Multi-Institution: Up to $50\,000\n• Funding period: 1 year\n• Competitive renewal: Opportunity for an additional year of funding \nLearn more and submit your LOI by November 6th: tango2research.org \n 
URL:https://rarediseases.org/event/submission-deadline-tango2-research-foundation-grant-cycle/
CATEGORIES:NORD Member Event
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:20261108T120000
DTEND;TZID=America/New_York:20261108T140000
DTSTAMP:20261007T131150Z
CREATED:20261005T152755Z
LAST-MODIFIED:20261007T131150Z
UID:10001404-1794139200-1794146400@rarediseases.org
SUMMARY:Mission MSA - Path to a Cure
DESCRIPTION:Join Mission MSA for their final Path to a Cure event of 2026! \nOn Sunday\, November 8 at 9:00am PT\, the MSA community will come together in San Diego\, California to honor and uplift those living with multiple system atrophy. This event fosters unity\, encouragement\, and meaningful community while raising funds that support everything Mission MSA does. Whether you register as an individual\, build a fundraising team\, join with loved ones\, or make a donation\, you play a vital role in moving their mission forward. \nLearn more and register today by visiting missionmsa.org/pathtoacure.
URL:https://rarediseases.org/event/mission-msa-path-to-a-cure/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261113T080000
DTEND;TZID=America/New_York:20261113T180000
DTSTAMP:20260915T154605Z
CREATED:20260915T154605Z
LAST-MODIFIED:20260915T154605Z
UID:10001263-1794556800-1794592800@rarediseases.org
SUMMARY:Cystinosis Research Network (CRN) Scientific Symposium: Advancing the Future of Cystinosis Care
DESCRIPTION:Cystinosis Research Network (CRN) Scientific Symposium: Advancing the Future of Cystinosis Care\nDate: November 13\, 2026\n8:00am – 6:00pm ET\nOne day\, in-person event\nWeber’s Hotel 3050 Jackson Ave\, Ann Arbor\, MI 48103\nRegistration and details at https://cystinosis.org/event/2026symposium/\nQuestions? Email info@cystinosis.org \nThe CRN Scientific Symposium is a one-day\, peer-to-peer meeting bringing together physicians\, clinicians\, researchers\, and scientists to explore emerging developments in cystinosis and lysosomal storage disorders — from newborn screening and novel treatment approaches to gene\, mRNA\, and cell-based therapies. Sessions will also examine advances across the broader lysosomal storage disorder landscape\, fostering exchange and collaboration among colleagues advancing cystinosis research and treatment. \nChaired by Elizabeth Ames\, MD\, PhD who serves as Clinical Assistant Professor at the University of Michigan and is Co-Director at the Michigan NORD Rare Disease Center of Excellence. \nCRN is a NORD member organization\nContact: Clair Johnstone\, cjohnstone@cystinosis.org
URL:https://rarediseases.org/event/cystinosis-research-network-crn-scientific-symposium-advancing-the-future-of-cystinosis-care/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261119
DTEND;VALUE=DATE:20261122
DTSTAMP:20260926T065547Z
CREATED:20260926T065547Z
LAST-MODIFIED:20260926T065547Z
UID:10001397-1795046400-1795305599@rarediseases.org
SUMMARY:IndoUSRare - 12th Annual Conference of the Society for Mitochondrial Research and Medicine
DESCRIPTION:SMRM 2026 — 12th Annual Conference of the Society for Mitochondrial Research and Medicine \nDescription:\nSMRM 2026 brings together clinicians\, researchers\, patient advocates\, and rare disease experts to advance conversations around mitochondrial science\, medicine\, research\, and patient care. In collaboration with IndoUSrare\, the conference will provide a platform for knowledge sharing\, scientific exchange\, and collaboration across the rare disease ecosystem. \nDate: November 19–21\, 2026\nTime: 10:00 AM–5:00 PM\nVenue: Narayana Health City\, Bengaluru\, India\nFormat: In-person \n  \nThe 12th Annual Conference of the Society for Mitochondrial Research and Medicine (SMRM 2026)is bringing together experts and stakeholders working to advance understanding and care in mitochondrial diseases. \nFrom scientific discovery to clinical care and patient advocacy\, the conference will create opportunities for meaningful exchange\, collaboration\, and new connections. \nNovember 19–21\, 2026\nNarayana Health City\, Bengaluru\, India\n10:00 AM–5:00 PM \nJoin IndoUSRare\, researchers\, clinicians\, patient advocates\, and rare disease leaders as we work toward a future where scientific progress translates into better outcomes for patients. \nSave the dates and be part of SMRM 2026: https://www.indousrare.org/smrm/
URL:https://rarediseases.org/event/indousrare-12th-annual-conference-of-the-society-for-mitochondrial-research-and-medicine/
CATEGORIES:NORD Member Event
END:VEVENT
END:VCALENDAR