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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:20260918
DTEND;VALUE=DATE:20260920
DTSTAMP:20260601T195634Z
CREATED:20260601T195634Z
LAST-MODIFIED:20260601T195634Z
UID:10001233-1789689600-1789862399@rarediseases.org
SUMMARY:2026 MSD Virtual Summit
DESCRIPTION:Register today for the 2026 MSD Virtual Summit! This FREE\, two-day\, online gathering will bring together researchers\, clinicians\, families\, advocates\, and partners from around the world. Through shared knowledge\, lived experience\, and innovative efforts\, we move closer to better care and future therapies for Multiple Sulfatase Deficiency. \nIn the coming weeks\, we will update this page with more details on the full schedule\, confirmed speakers\, and more for this two-day Virtual Summit. \nThe program will center around core themes highlighted below: areas where collaboration among clinicians\, researchers\, families\, advocates and partners is driving real progress. Because\, in partnership\, we thrive. \nTogether\, we can build a future where everyone affected by MSD can live without limitation.
URL:https://rarediseases.org/event/2026-msd-virtual-summit/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260919
DTEND;VALUE=DATE:20260920
DTSTAMP:20260608T143929Z
CREATED:20260608T143929Z
LAST-MODIFIED:20260608T143929Z
UID:10001235-1789776000-1789862399@rarediseases.org
SUMMARY:Ramsay Hunt Syndrome Foundation Face Forward 2026 Patient Support Summit
DESCRIPTION:On September 19\, the 2026 Face Forward Patient Support Summit will bring together patients\, caregivers\, clinicians and advocates for an inspiring day of connection\, education\, and empowerment. \nThis event will feature: \n\n\nExpert medical presentations on the latest RHS research and treatment advances \n\n\nInteractive workshops and wellness sessions for patients and caregivers \n\n\nNetworking and advocacy opportunities to strengthen our growing community \n\n\n​​​​​ \n\n\n\nRegister\n\n\nFace Forward 2026: RHSF Patient Support Summit\nSeptember 19\, 2026\n\n\nEarly Bird Rate: $135 (until June 15th)Regular Rate: $160 \n​ \nLocation: \nFriday Center\, 100 Friday Center Dr \nChapel Hill\, NC 27517 \n​ \nDate and time: Sat\, Sep 19\, 2026 8:00 AM – 4:00 PM \nOrganizer: Ramsay Hunt Syndrome Foundation \n2026 Face Forward Summit
URL:https://rarediseases.org/event/ramsay-hunt-syndrome-foundation-face-forward-2026-patient-support-summit/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260919
DTEND;VALUE=DATE:20260921
DTSTAMP:20260919T021237Z
CREATED:20260919T021237Z
LAST-MODIFIED:20260919T021237Z
UID:10001264-1789776000-1789948799@rarediseases.org
SUMMARY:7th Annual Free All-Community Virtual MSA Conference - September 19-20\, 2026
DESCRIPTION:7th Annual Free All-Community Virtual MSA Conference – September 19-20\, 2026 \nMSA Hub / Conference Registration\nMSA-Hub.circle.so \nExciting lectures with both clinicians & researchers about MSA diagnosis\, orthostatic hypotension\, alpha-synuclein\, biomarkers\, disease mechanisms\, and new treatments and clinical trials.\nThere are also Ask the Doctor and Ask the Scientist Q&As\, plus a Caregivers Breakout. \nExpert speakers include: Alberto Espay\, Satish Raj\, Gabor G. Kovacs\, Glenda Halliday\, Maria Xilouri\, Victor Dieriks\,Enrique Urrea\, Gabriel José Arango Uribe\, Daniel Garbin Di Luca\, Philip Tipton\,Nirosen Vijiaratnam\, Hiromasa Mori\, Sindhu Ramesh\, Peter Barbuti and more! \nIt’s free and online. Join the MSA Hub and register to attend:\nMSA Hub / Conference Registration\nMSA-Hub.circle.so \nThank you to our sponsors\, speakers\, board members\, moderators & volunteers! \n\nHealth care providers and science related professionals can receive a certificate verifying attendance.  Please contact us in the MSA Hub (MSA-Hub.Circle.so) for further information.
URL:https://rarediseases.org/event/7th-annual-free-all-community-virtual-msa-conference-september-19-20-2026/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260919T150000
DTEND;TZID=America/New_York:20260919T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000842-1789830000-1789837200@rarediseases.org
SUMMARY:🌟 Raymond A. Wood Foundation Survivor Support Group – Monthly Virtual Meetings
DESCRIPTION:Survivor Support Group – Monthly Virtual Meetings\nDates: Third Saturday of each monthTime: 3:00 PM ETLocation: Online via ZoomRegistration: Register here \nThe Raymond A. Wood Foundation’s Survivor Support Group offers a monthly virtual gathering for adult survivors of hypothalamic-pituitary brain tumors. Moderated by brain tumor survivor Jason Burris\, these sessions provide a safe space to share experiences\, discuss challenges\, and connect with others who understand your journey. \nEach meeting includes breakout sessions tailored to different age groups\, ensuring that all participants can engage in meaningful conversations. Whether you’re seeking support\, camaraderie\, or simply a place to be heard\, this group is here for you. \nParticipation is free\, but registration is required. For more information or assistance\, please contact outreach@rawoodfoundation.org.
URL:https://rarediseases.org/event/%f0%9f%8c%9f-raymond-a-wood-foundation-survivor-support-group-monthly-virtual-meetings/2026-09-19/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260919T180000
DTEND;TZID=America/New_York:20260919T180000
DTSTAMP:20260731T144542Z
CREATED:20260715T154044Z
LAST-MODIFIED:20260731T144542Z
UID:10001245-1789840800-1789840800@rarediseases.org
SUMMARY:Left\, Right\, Center Fundraising Tournament
DESCRIPTION:Join this fun New England Patriots-themed fundraiser hosted by Julia Maderia in East Bridgewater\, MA. Support Julia’s fundraising efforts for NORD Running for Rare. \nClick here to read more and RSVP. \nClick here to enlarge the image.
URL:https://rarediseases.org/event/left-right-center-fundraising-tournament/
LOCATION:East Bridgewater\, MA
CATEGORIES:Running for Rare
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/07/IMG_6791-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260920T090000
DTEND;TZID=America/New_York:20260920T170000
DTSTAMP:20260919T033020Z
CREATED:20260919T033020Z
LAST-MODIFIED:20260919T033020Z
UID:10001267-1789894800-1789923600@rarediseases.org
SUMMARY:Join Mission MSA for our Path to a Cure in Philadelphia!
DESCRIPTION:Join Mission MSA for our Path to a Cure in Philadelphia! \nOn Sunday\, September 20 at 9:00am ET\, the MSA community will come together at Penn Park in partnership with the University of Pennsylvania\, a designated MSA Center of Excellence\, to honor and uplift those living with multiple system atrophy. This gathering fosters unity\, encouragement\, and meaningful community connection while raising funds that support everything Mission MSA does—from critical research to vital patient resources. \nWhether you register as an individual\, build a fundraising team with loved ones\, order your exclusive 2026 event t-shirt\, sign up to volunteer\, or make a donation\, you play a vital role in moving their mission forward. \nPenn Park | Philadelphia\, PA\nSunday\, September 20\, 2026 at 9:00am ET \nTime is running out to register! Learn more and secure your spot today by visiting missionmsa.org/pathtoacure.
URL:https://rarediseases.org/event/join-mission-msa-for-our-path-to-a-cure-in-philadelphia/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260923
DTEND;VALUE=DATE:20260924
DTSTAMP:20260824T041141Z
CREATED:20260824T041141Z
LAST-MODIFIED:20260824T041141Z
UID:10001258-1790121600-1790207999@rarediseases.org
SUMMARY:Rare Cancer Day\, September 23 
DESCRIPTION:Rare Cancer Day\, September 23  \nRare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Spearheaded by the NORD Rare Cancer Coalition®\, which is composed of 30+ rare cancer-specific member organizations\, Rare Cancer Day is observed on September 23 to highlight the challenges patients face and to unify individuals living with rare cancers for awareness and early diagnosis. Join us for our Rare Cancer Day webinar\, and follow us throughout the month to learn more about patients\, caregivers\, and clinicians advocating for effective treatment for rare cancers.  
URL:https://rarediseases.org/event/rare-cancer-day-september-23/
CATEGORIES:NORD Events,NORD Member Event
END:VEVENT
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;TZID=America/New_York:20260924T160000
DTEND;TZID=America/New_York:20260924T170000
DTSTAMP:20260903T144909Z
CREATED:20260702T174604Z
LAST-MODIFIED:20260903T144909Z
UID:10001199-1790265600-1790269200@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;VALUE=DATE:20260925
DTEND;VALUE=DATE:20260927
DTSTAMP:20260717T175154Z
CREATED:20260717T175154Z
LAST-MODIFIED:20260717T175154Z
UID:10001246-1790294400-1790467199@rarediseases.org
SUMMARY:2026 Wilson Disease Association Annual Conference
DESCRIPTION:Registration is now open for the 2026 WDA Annual Conference\, taking place September 25–26 in Chicago. \nCo-hosted by Northwestern University Feinberg School of Medicine’s Wilson Disease Center of Excellence and the Wilson Disease Association\, the conference will bring together healthcare professionals\, researchers\, advocates\, industry partners\, patients\, and caregivers from across the Wilson disease community. \nThe event features a dual-track agenda\, including a physician education program for healthcare professionals and dedicated programming for patients and families. \nJoin us for two days of education\, networking\, collaboration\, and community-building with leaders across the Wilson disease field. \nEarly-bird registration is available through August 16. \nView the full agenda\, registration details\, sponsorship opportunities\, travel assistance information\, and hotel information at: https://wilsondisease.org/get-involved/events/annual-conference/ \n#WilsonDisease #RareDisease #MedicalEducation #ClinicalResearch #PatientAdvocacy
URL:https://rarediseases.org/event/2026-wilson-disease-association-annual-conference/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261001T160000
DTEND;TZID=America/New_York:20261001T200000
DTSTAMP:20260710T163556Z
CREATED:20260710T163556Z
LAST-MODIFIED:20260710T163556Z
UID:10001244-1790870400-1790884800@rarediseases.org
SUMMARY:2nd Annual Oktoberfest - Raise a Stein for a Cause
DESCRIPTION:Join community members for an evening of celebration and purpose at our Oktoberfest-themed happy hour! Enjoy authentic German beer\, delicious food\, live music\, and exciting raffle prizes – all while supporting a powerful cause. Last year’s inaugural event raised over $50\,000 for the National Organization for Rare Disorders (NORD). \nThe Benassi family\, alongside business partners and friends\, created F-U Rare Disorders Oktoberfest as a way to give back while having some fun\, gathering the community to raise awareness and support for those impacted by rare disorders. \nClick here to enlarge the image.
URL:https://rarediseases.org/event/2nd-annual-oktoberfest-raise-a-stein-for-a-cause/
LOCATION:Buffalo Creek Brewing\, Long Grove\, IL\, 360 Historical Lane\, Long Grove\, IL\, 60047\, United States
ATTACH;FMTTYPE=image/jpeg:https://rarediseases.org/wp-content/uploads/2026/07/2026-Oktoberfest-for-NORD-flier.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261003T130000
DTEND;TZID=America/New_York:20261003T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000946-1791032400-1791037800@rarediseases.org
SUMMARY:Pericarditis Alliance Virtual Support Group Every 1st Saturday
DESCRIPTION: \nPericarditis Alliance offers a once a month virtual support group for patients and their families to check in\, connect and learn from each other. They invite speakers to talk about topics such as adopting an anti-inflammatory diet and functional medicine. At the end of each meeting\, they invite participants to join in a short meditation. \n  \nThe next Virtual Support Group meeting is September 6\, 2025 1:00 pm EST\, 10:00 am PST\, and there will be a meeting on the first Saturday of each Month. Sign up here: https://pericarditisalliance.org/events/
URL:https://rarediseases.org/event/pericarditis-alliance-virtual-support-group-every-1st-saturday/2026-10-03/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20261012
DTEND;VALUE=DATE:20261017
DTSTAMP:20260226T142043Z
CREATED:20260226T142043Z
LAST-MODIFIED:20260226T142043Z
UID:10001169-1791763200-1792195199@rarediseases.org
SUMMARY:Cure HHT International Scientific Conference
DESCRIPTION:Join Cure HHT in Cape Cod\, October 12-16\, 2026\, as breakthroughs set sail at the 16th HHT International Scientific Conference. Together\, we’ll explore the latest advances in HHT research\, diagnosis\, and care — connecting scientists\, clinicians\, and innovators from across the globe. Engage in bold discussions\, share discoveries\, and help shape the next era of HHT science.
URL:https://rarediseases.org/event/cure-hht-international-scientific-conference/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;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;VALUE=DATE:20261018
DTEND;VALUE=DATE:20261019
DTSTAMP:20260824T041326Z
CREATED:20260824T041326Z
LAST-MODIFIED:20260824T041326Z
UID:10001259-1792281600-1792367999@rarediseases.org
SUMMARY:Rare Cancer Coalition Reception\, October 18 
DESCRIPTION:Rare Cancer Coalition Reception\, October 18\nNORD Breakthrough Summit\nGrand Hyatt\, Washington\, D.C.   \nThe National Organization for Rare Disorders (NORD) Rare Cancer Coalition is hosting a special networking reception at the NORD Rare Diseases & Orphan Products Breakthrough Summit on Sunday\, October 18.  \nThe reception will be held at the conference hotel and offers dedicated networking opportunities for patient organizations\, academic research institutions\, clinicians\, regulators\, and industry partners working in the field of rare cancers. Light reception and drinks will be provided during this event. Join us!  \n  \nScheduled Date Pending  \n\nCDMRP DOD Funding for Rare Cancer Research\, Updates and Application Process Webinar (May) \n\n\nPatient Perspectives Roundtable (June/July) \n\n\nAlternatives to Randomized Clinical Trials Panel (September/October) 
URL:https://rarediseases.org/event/rare-cancer-coalition-reception-october-18/
CATEGORIES:NORD Events,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: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;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: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:20261121T150000
DTEND;TZID=America/New_York:20261121T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000844-1795273200-1795280400@rarediseases.org
SUMMARY:🌟 Raymond A. Wood Foundation Survivor Support Group – Monthly Virtual Meetings
DESCRIPTION:Survivor Support Group – Monthly Virtual Meetings\nDates: Third Saturday of each monthTime: 3:00 PM ETLocation: Online via ZoomRegistration: Register here \nThe Raymond A. Wood Foundation’s Survivor Support Group offers a monthly virtual gathering for adult survivors of hypothalamic-pituitary brain tumors. Moderated by brain tumor survivor Jason Burris\, these sessions provide a safe space to share experiences\, discuss challenges\, and connect with others who understand your journey. \nEach meeting includes breakout sessions tailored to different age groups\, ensuring that all participants can engage in meaningful conversations. Whether you’re seeking support\, camaraderie\, or simply a place to be heard\, this group is here for you. \nParticipation is free\, but registration is required. For more information or assistance\, please contact outreach@rawoodfoundation.org.
URL:https://rarediseases.org/event/%f0%9f%8c%9f-raymond-a-wood-foundation-survivor-support-group-monthly-virtual-meetings/2026-11-21/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261205T130000
DTEND;TZID=America/New_York:20261205T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000948-1796475600-1796481000@rarediseases.org
SUMMARY:Pericarditis Alliance Virtual Support Group Every 1st Saturday
DESCRIPTION: \nPericarditis Alliance offers a once a month virtual support group for patients and their families to check in\, connect and learn from each other. They invite speakers to talk about topics such as adopting an anti-inflammatory diet and functional medicine. At the end of each meeting\, they invite participants to join in a short meditation. \n  \nThe next Virtual Support Group meeting is September 6\, 2025 1:00 pm EST\, 10:00 am PST\, and there will be a meeting on the first Saturday of each Month. Sign up here: https://pericarditisalliance.org/events/
URL:https://rarediseases.org/event/pericarditis-alliance-virtual-support-group-every-1st-saturday/2026-12-05/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261219T150000
DTEND;TZID=America/New_York:20261219T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000845-1797692400-1797699600@rarediseases.org
SUMMARY:🌟 Raymond A. Wood Foundation Survivor Support Group – Monthly Virtual Meetings
DESCRIPTION:Survivor Support Group – Monthly Virtual Meetings\nDates: Third Saturday of each monthTime: 3:00 PM ETLocation: Online via ZoomRegistration: Register here \nThe Raymond A. Wood Foundation’s Survivor Support Group offers a monthly virtual gathering for adult survivors of hypothalamic-pituitary brain tumors. Moderated by brain tumor survivor Jason Burris\, these sessions provide a safe space to share experiences\, discuss challenges\, and connect with others who understand your journey. \nEach meeting includes breakout sessions tailored to different age groups\, ensuring that all participants can engage in meaningful conversations. Whether you’re seeking support\, camaraderie\, or simply a place to be heard\, this group is here for you. \nParticipation is free\, but registration is required. For more information or assistance\, please contact outreach@rawoodfoundation.org.
URL:https://rarediseases.org/event/%f0%9f%8c%9f-raymond-a-wood-foundation-survivor-support-group-monthly-virtual-meetings/2026-12-19/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20270102T130000
DTEND;TZID=America/New_York:20270102T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000949-1798894800-1798900200@rarediseases.org
SUMMARY:Pericarditis Alliance Virtual Support Group Every 1st Saturday
DESCRIPTION: \nPericarditis Alliance offers a once a month virtual support group for patients and their families to check in\, connect and learn from each other. They invite speakers to talk about topics such as adopting an anti-inflammatory diet and functional medicine. At the end of each meeting\, they invite participants to join in a short meditation. \n  \nThe next Virtual Support Group meeting is September 6\, 2025 1:00 pm EST\, 10:00 am PST\, and there will be a meeting on the first Saturday of each Month. Sign up here: https://pericarditisalliance.org/events/
URL:https://rarediseases.org/event/pericarditis-alliance-virtual-support-group-every-1st-saturday/2027-01-02/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20270116T150000
DTEND;TZID=America/New_York:20270116T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000846-1800111600-1800118800@rarediseases.org
SUMMARY:🌟 Raymond A. Wood Foundation Survivor Support Group – Monthly Virtual Meetings
DESCRIPTION:Survivor Support Group – Monthly Virtual Meetings\nDates: Third Saturday of each monthTime: 3:00 PM ETLocation: Online via ZoomRegistration: Register here \nThe Raymond A. Wood Foundation’s Survivor Support Group offers a monthly virtual gathering for adult survivors of hypothalamic-pituitary brain tumors. Moderated by brain tumor survivor Jason Burris\, these sessions provide a safe space to share experiences\, discuss challenges\, and connect with others who understand your journey. \nEach meeting includes breakout sessions tailored to different age groups\, ensuring that all participants can engage in meaningful conversations. Whether you’re seeking support\, camaraderie\, or simply a place to be heard\, this group is here for you. \nParticipation is free\, but registration is required. For more information or assistance\, please contact outreach@rawoodfoundation.org.
URL:https://rarediseases.org/event/%f0%9f%8c%9f-raymond-a-wood-foundation-survivor-support-group-monthly-virtual-meetings/2027-01-16/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20270124T080000
DTEND;TZID=America/New_York:20270124T170000
DTSTAMP:20260207T163102Z
CREATED:20260126T211212Z
LAST-MODIFIED:20260207T163102Z
UID:10001096-1800777600-1800810000@rarediseases.org
SUMMARY:Moebius Syndrome Awareness Day
DESCRIPTION:Moebius Syndrome Awareness Day is on January 24! \nMoebius syndrome is a rare\, neurological condition that impacts 2 to 20 per million births. The Moebius Syndrome Foundation invites everyone to learn more about Moebius syndrome and the resources offered by the Moebius Syndrome Foundation at www.moebiussyndrome.org. \nIt causes facial paralysis or weakness and can cause speech\, feeding and respiratory difficulties\, limb differences\, and other symptoms. It is a congenital\, non-progressive disorder that affects individuals from all walks of life. For over three decades\, the Moebius Syndrome Foundation has been leading the way advocating for awareness\, advocacy\, creating educational resources\, connecting people\, providing support services\, and funding critical research initiatives. \nGet Involved \nHelp them celebrate this event all month long in January by submitting your stories and photos. Please email materials to them at: social@moebiussyndrome.org. \nOur regional coordinators are hosting in-person events across the country! Celebrate by finding an event near you. \nYou can also participate and support Moebius Syndrome Awareness through social media by sharing your memories using the hashtags #MSAD2026 and #MoebiusSyndomeFoundation. \nLearn more about Moebius syndrome.
URL:https://rarediseases.org/event/jan-24-moebius-syndrome-awareness-day/2027-01-24/
CATEGORIES:NORD Member Event
END:VEVENT
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