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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: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: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;TZID=America/New_York:20261101T120000
DTEND;TZID=America/New_York:20261101T133000
DTSTAMP:20260922T155610Z
CREATED:20260922T155610Z
LAST-MODIFIED:20260922T155610Z
UID:10001275-1793534400-1793539800@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/2026-11-01/
CATEGORIES:NORD Member Event
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:20261107T130000
DTEND;TZID=America/New_York:20261107T143000
DTSTAMP:20260922T155902Z
CREATED:20260922T155902Z
LAST-MODIFIED:20260922T155902Z
UID:10001335-1794056400-1794061800@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/2026-11-07/
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
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;VALUE=DATE:20261210
DTEND;VALUE=DATE:20261214
DTSTAMP:20261005T154206Z
CREATED:20261005T154206Z
LAST-MODIFIED:20261005T154206Z
UID:10001405-1796860800-1797206399@rarediseases.org
SUMMARY:SIAMG - Indo US Bridging RARE Summit 2026
DESCRIPTION:The SIAMG – Indo US Bridging RARE Summit 2026 brings together patients\, researchers\, clinicians\, industry leaders\, innovators\, and advocates to strengthen collaboration and accelerate progress in rare disease research\, diagnosis\, therapies\, and patient care. The Summit will serve as a platform for cross-border knowledge exchange and meaningful partnerships across the rare disease community. \nDate: December 10–13\, 2026\nTime: 10:00 AM–5:00 PM\nVenue: Narayana Health City\, Bengaluru\, India\nFormat: In-person \nSIAMG \n \n 
URL:https://rarediseases.org/event/siamg-indo-us-bridging-rare-summit-2026/
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
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20270206T130000
DTEND;TZID=America/New_York:20270206T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000950-1801918800-1801924200@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/2027-02-06/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20270220T150000
DTEND;TZID=America/New_York:20270220T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000847-1803135600-1803142800@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/2027-02-20/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20270306T130000
DTEND;TZID=America/New_York:20270306T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000951-1804338000-1804343400@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/2027-03-06/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20270320T150000
DTEND;TZID=America/New_York:20270320T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000848-1805554800-1805562000@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/2027-03-20/
CATEGORIES:NORD Member Event
END:VEVENT
END:VCALENDAR