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X-WR-CALDESC:Events for National Organization for Rare Disorders
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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:20261021T140000
DTEND;TZID=America/New_York:20261021T150000
DTSTAMP:20261021T190722Z
CREATED:20261021T190722Z
LAST-MODIFIED:20261021T190722Z
UID:10001409-1792591200-1792594800@rarediseases.org
SUMMARY:IPPF Patient Education Webinar November 13th
DESCRIPTION:Join the IPPF for their next Patient Education Webinar on November 13\, 11 am PST/ 2:00 pm EST where a physician expert will have an open Q&A session where you can ask questions and learn more about living with pemphigus and pemphigoid.\nWho will be on the webinar?\nDr. Emily Gorell\, Assistant Professor of Dermatology and Associate Director of Clinical Research\, Dermatology at the University of Colorado\nRegister online: https://zoom.us/webinar/register/WN_6_affyiGTX-_jQh8h74dfQ
URL:https://rarediseases.org/event/ippf-patient-education-webinar-november-13th/
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;TZID=America/New_York:20261102T110000
DTEND;TZID=America/New_York:20261102T121500
DTSTAMP:20261014T220733Z
CREATED:20261014T220733Z
LAST-MODIFIED:20261014T220733Z
UID:10001407-1793617200-1793621700@rarediseases.org
SUMMARY:International Pemphigus and Pemphigoid Foundation (IPPF) Scientific Seminar
DESCRIPTION:Join the International Pemphigus and Pemphigoid Foundation (IPPF) for the next Scientific Seminar on Monday\, November 2nd 11:00 AM – 12:15 PM EST/ 5:00 PM – 6:15 PM (17:00 – 18:15) Central European Time. \nIn 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. \nTopics: “The Receptor BLT1 is Essential on Neutrophils in a Mouse Model of Mucous Membrane Pemphigoid”- Christian Sadik\, MD/PhD\, MBA\, Professor of Dermatology\, University of Lübeck\, Lübeck\, Germany \n“Understanding IgE-mediated Autoimmunity and Autoallergy”- Pavel Kolkhir\, M.D.\, PhD\, Head of Healthcare (Real World) Research\, Institute of Allergology\, Charité – Universitätsmedizin Berlin\, Berlin\, Germany \nRegistration: https://zoom.us/webinar/register/WN_Iv9LvtSEQcuQ0Igo1LiwFw
URL:https://rarediseases.org/event/international-pemphigus-and-pemphigoid-foundation-ippf-scientific-seminar/
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:20261107T143000
DTEND;TZID=America/New_York:20261107T160000
DTSTAMP:20261102T160052Z
CREATED:20261102T160052Z
LAST-MODIFIED:20261102T160052Z
UID:10001415-1794061800-1794067200@rarediseases.org
SUMMARY:Wilson Disease Association Affiliate Event Lunch: “Detecting Wilson Disease Early.”
DESCRIPTION:The Wilson Disease Association cordially invites physicians attending The Liver Meeting® 2026 to join us for a complimentary Affiliate Event lunch: “Detecting Wilson Disease Early.” Enjoy lunch and networking with fellow physicians and patient advocates in a welcoming setting\, with discussion touching on newborn and genetic screening\, how Wilson disease presents differently across the lifespan\, and reflections from a patient’s own diagnosis journey and a career in medical journalism—including what physicians recall about Wilson disease from medical school. \n🗓️ Saturday\, November 7\, 2026 | 12:30–2:00 PM MST \n📍 Hyatt Regency Denver at the Colorado Convention Center — Headquarters Hotel\, Room: Centennial C \nSpace is limited. Save your spot today: https://wilsondisease.org/medical-professionals/
URL:https://rarediseases.org/event/wilson-disease-association-affiliate-event-lunch-detecting-wilson-disease-early/
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:20261109T170000
DTEND;TZID=America/New_York:20261109T180000
DTSTAMP:20261030T172617Z
CREATED:20261030T172617Z
LAST-MODIFIED:20261030T172617Z
UID:10001412-1794243600-1794247200@rarediseases.org
SUMMARY:Wisconsin Rare Action Coalition Information Meeting
DESCRIPTION:As the National Organization for Rare Disorders (NORD) looks to 2027\, we invite residents of Wisconsin to join us for virtual community conversation to help shape rare disease public policy in their state!\n\nRegister\n\nLearn from NORD’s State Policy team about policy matters related to Rare Disease Advisory Councils\, access to medical foods and formulas\, and network access. This meeting will also provide the opportunity for Wisconsin residents to ask questions\, share experiences\, and to learn how they can become involved in NORD’s Wisconsin Rare Action Coalition to help drive future change!
URL:https://rarediseases.org/event/wisconsin-rare-action-coalition-information-meeting/
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/10/WI.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261109T183000
DTEND;TZID=America/New_York:20261109T193000
DTSTAMP:20261030T172144Z
CREATED:20261030T172144Z
LAST-MODIFIED:20261030T172144Z
UID:10001411-1794249000-1794252600@rarediseases.org
SUMMARY:Montana Rare Action Coalition Information Meeting
DESCRIPTION:As the National Organization for Rare Disorders (NORD) looks to 2027\, we invite residents of Montana to join us for a virtual community conversation to help shape rare disease public policy in their state!\n\nRegister\n\nLearn from NORD’s State Policy team about policy matters related to access to medical foods and formulas\, step therapy\, and network access. This meeting will also provide the opportunity for Montana residents to ask questions\, share experiences\, and to learn how they can become involved in NORD’s Montana Rare Action Coalition to help drive future change!
URL:https://rarediseases.org/event/montana-rare-action-coalition-information-meeting/
CATEGORIES:Advocate,Rare Action Network Events
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/10/MT.png
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;TZID=America/New_York:20261115T140000
DTEND;TZID=America/New_York:20261115T160000
DTSTAMP:20261102T161512Z
CREATED:20261102T161512Z
LAST-MODIFIED:20261102T161512Z
UID:10001416-1794751200-1794758400@rarediseases.org
SUMMARY:IPPF Virtual Florida Patient Support Group
DESCRIPTION:Join the IPPF for their next virtual Florida Patient Support Group on November 15th at 2pm EST. 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. Register online: https://fundraise.pemphigus.org/group_sfl_november_2026
URL:https://rarediseases.org/event/ippf-virtual-florida-patient-support-group/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261117
DTEND;VALUE=DATE:20261118
DTSTAMP:20261021T200702Z
CREATED:20261021T200430Z
LAST-MODIFIED:20261021T200702Z
UID:10001410-1794873600-1794959999@rarediseases.org
SUMMARY:MitoAction and The POLG Foundation POLG-Related Disorders. EL-PFDD Meeting
DESCRIPTION:POLG EL-PFDD Meeting \nMitoAction and The POLG Foundation are proud to announce that they will co-host an Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting focused on POLG-Related Disorders. The virtual meeting will be held on Tuesday\, November 17\, 2026\, and is open to all members of the mitochondrial disease community\, including patients\, caregivers\, clinicians\, researchers\, and industry partners. \nThis PFDD meeting is a critical opportunity to elevate the voice of those impacted by POLG\, helping the U.S. Food and Drug Administration (FDA) and other key stakeholders understand the real-life burden of this complex and progressive group of mitochondrial disorders. Insights shared during the meeting will help guide future research\, therapy development\, and regulatory decisions. Together\, MitoAction and The POLG Foundation are working to ensure the meeting reflects the full range of POLG experiences\, from children with Alpers-Huttenlocher syndrome to adults living with ataxia and PEO. \nParticipants will be invited to share their experiences through live testimony\, polling\, and written comments. MitoAction encourages all individuals and families affected by POLG—and those who support them—to attend and be part of shaping the future of mitochondrial disease care and treatment. \nThere are three ways to participate in the meeting:\n1) The “Pre-meeting POLG Survey” gathers vital data that will allow scientists and the community to better understand the impact of POLG – https://survey.alchemer.com/s3/8950869/POLG-PFDD-Patient-Caregiver-Survey\n2) Share your story on MitoAction’s website – https://www.mitoaction.org/join-the-cause/patient-focused-drug-development-meetings/patient-focused-drug-development-meeting-on-polg/\n3) Register to attend the meeting – https://mitoaction-org.zoom.us/webinar/register/WN_GX3iFfxESiqNMRzGcBQQ0A#/ \nQuestions? Contact MitoAction at info@mitoaction.org. \n 
URL:https://rarediseases.org/event/mitoaction-and-the-polg-foundation-polg-related-disorders-el-pfdd-meeting/
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;TZID=America/New_York:20261209T190000
DTEND;TZID=America/New_York:20261209T200000
DTSTAMP:20261102T154746Z
CREATED:20261102T154746Z
LAST-MODIFIED:20261102T154746Z
UID:10001414-1796842800-1796846400@rarediseases.org
SUMMARY:IPPF Mid-Atlantic Patient Support Group Meeting "Nutrition and Autoimmune Bullous Disease"
DESCRIPTION:Join the IPPF for the next virtual Mid-Atlantic Patient Support Group Meeting on December 9th to discuss “Nutrition and Autoimmune Bullous Disease” with Dr. Kyle Amber\, Associate Professor of Dermatology; Vice Chair of Research; Director\, Dermatology Infusion Center; Associate Professor of Ophthalmology\, Rush University. 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. Register online: https://fundraise.pemphigus.org/group_midatlantic_december_2026
URL:https://rarediseases.org/event/ippf-mid-atlantic-patient-support-group-meeting-nutrition-and-autoimmune-bullous-disease/
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
END:VCALENDAR