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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;TZID=America/New_York:20260801T130000
DTEND;TZID=America/New_York:20260801T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000944-1785589200-1785594600@rarediseases.org
SUMMARY:Pericarditis Alliance Virtual Support Group Every 1st Saturday
DESCRIPTION: \nPericarditis Alliance offers a once a month virtual support group for patients and their families to check in\, connect and learn from each other. They invite speakers to talk about topics such as adopting an anti-inflammatory diet and functional medicine. At the end of each meeting\, they invite participants to join in a short meditation. \n  \nThe next Virtual Support Group meeting is September 6\, 2025 1:00 pm EST\, 10:00 am PST\, and there will be a meeting on the first Saturday of each Month. Sign up here: https://pericarditisalliance.org/events/
URL:https://rarediseases.org/event/pericarditis-alliance-virtual-support-group-every-1st-saturday/2026-08-01/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260806T160000
DTEND;TZID=America/New_York:20260806T170000
DTSTAMP:20260803T222247Z
CREATED:20260803T222247Z
LAST-MODIFIED:20260803T222247Z
UID:10001254-1786032000-1786035600@rarediseases.org
SUMMARY:Adult Cystinosis Webinar: Beyond the Kidneys
DESCRIPTION:Adult Cystinosis Webinar: Beyond the Kidneys\n\nDate: Thursday\, August 6\n\nTime: 4:00 PM CT\n\nLocation: Zoom\n\n☆ Topics of Discussion ☆\n• Transitioning from pediatric to adult care\n• Gaps in adult cystinosis care\n• Psychosocial experiences and quality of life\n• Opportunities to improve long-term support and care
URL:https://rarediseases.org/event/adult-cystinosis-webinar-beyond-the-kidneys/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260810T120000
DTEND;TZID=America/New_York:20260810T130000
DTSTAMP:20260630T155003Z
CREATED:20260630T155003Z
LAST-MODIFIED:20260630T155003Z
UID:10001241-1786363200-1786366800@rarediseases.org
SUMMARY:Students for Rare New Chapter Info Session - August
DESCRIPTION:Are you a collegiate student interested in starting a NORD Students for Rare chapter on campus? Come and learn more about the program and next steps during our New Chapter Info Session! Our August session will take place on August 10 at 12:00 p.m. ET. We look forward to seeing you there!\nRegister Here
URL:https://rarediseases.org/event/students-for-rare-new-chapter-info-session-august/
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/06/Students-for-Rare-Info-Session-Social-Graphic-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260813T180000
DTEND;TZID=America/New_York:20260813T200000
DTSTAMP:20260724T162337Z
CREATED:20260724T162337Z
LAST-MODIFIED:20260724T162337Z
UID:10001249-1786644000-1786651200@rarediseases.org
SUMMARY:2026 NYC Marathon fundraiser
DESCRIPTION:Come on out and support Maeve! Raffles and 15% of drink sales benefit NORD.  \nRSVP Here
URL:https://rarediseases.org/event/2026-nyc-marathon-fundraiser/
LOCATION:East Point Bar\, 25 Avenue B\, New York\, NY\, 10009\, United States
CATEGORIES:Running for Rare
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/07/Maeves-Fundraiser-for-the-2026-New-York-City-marathon.png
ORGANIZER;CN="NORD":MAILTO:events@rarediseases.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260815
DTEND;VALUE=DATE:20260816
DTSTAMP:20260811T202527Z
CREATED:20260630T125859Z
LAST-MODIFIED:20260811T202527Z
UID:10001238-1786752000-1786838399@rarediseases.org
SUMMARY:Support Calley Forbes Fundraising for NORD Running for Rare!
DESCRIPTION:*Win a 2026/ 2027 Membership to Salmon Falls Country Club Hollis\, ME \n$100 minimum donation per chance\n125 chances to win \nDonate June 11- July 9th\nWinner selected LIVE July 9th 8:00pm\nRiver Tap & Grill\n52 Golf Course Lane\, Hollis\, ME \nThank you\, Salmon Falls Country Club/ River Tap & Grill for your generous donation! \nSupport Calley Today!
URL:https://rarediseases.org/event/support-calley-forbes-fundraising-for-nord-running-for-rare/
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/06/Image-17-scaled-e1782824229236.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260815T150000
DTEND;TZID=America/New_York:20260815T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000841-1786806000-1786813200@rarediseases.org
SUMMARY:🌟 Raymond A. Wood Foundation Survivor Support Group – Monthly Virtual Meetings
DESCRIPTION:Survivor Support Group – Monthly Virtual Meetings\nDates: Third Saturday of each monthTime: 3:00 PM ETLocation: Online via ZoomRegistration: Register here \nThe Raymond A. Wood Foundation’s Survivor Support Group offers a monthly virtual gathering for adult survivors of hypothalamic-pituitary brain tumors. Moderated by brain tumor survivor Jason Burris\, these sessions provide a safe space to share experiences\, discuss challenges\, and connect with others who understand your journey. \nEach meeting includes breakout sessions tailored to different age groups\, ensuring that all participants can engage in meaningful conversations. Whether you’re seeking support\, camaraderie\, or simply a place to be heard\, this group is here for you. \nParticipation is free\, but registration is required. For more information or assistance\, please contact outreach@rawoodfoundation.org.
URL:https://rarediseases.org/event/%f0%9f%8c%9f-raymond-a-wood-foundation-survivor-support-group-monthly-virtual-meetings/2026-08-15/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260819T130000
DTEND;TZID=America/New_York:20260819T140000
DTSTAMP:20260729T192158Z
CREATED:20260728T172018Z
LAST-MODIFIED:20260729T192158Z
UID:10001250-1787144400-1787148000@rarediseases.org
SUMMARY:Webinar: Understanding Medical Nutrition and Insurance Coverage Challenges
DESCRIPTION:For many rare disease patients\, medical nutrition products are life-sustaining medicine\, yet insurance coverage for medical nutrition is inconsistent and varies widely based on a patient’s diagnosis\, insurance plan type\, and state of residence. During this webinar\, we’ll teach you about the meaning of “medically necessary nutrition products”\, how medical nutrition coverage challenges impact the rare disease community\, and ways you can advocate for improved medical nutrition coverage in your state and at the federal level. \nRegister
URL:https://rarediseases.org/event/understanding-medical-nutrition-and-insurance-coverage-challenges/
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/07/8-19-26-RAN-Webinar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260823
DTEND;VALUE=DATE:20260824
DTSTAMP:20260630T123624Z
CREATED:20260630T122919Z
LAST-MODIFIED:20260630T123624Z
UID:10001236-1787443200-1787529599@rarediseases.org
SUMMARY:ED for EDS4 Golf Tournament
DESCRIPTION:ED for EDS4 presents their 3rd Annual Golf Tournament to benefit the National Organization for Rare Disorders\, hosted at the Heritage Country Club in Charlton\, MA. Swing by after the tournament for dinner and a chance to win cash and prizes. \nClick here to enlarge the image.
URL:https://rarediseases.org/event/ed-for-eds4-golf-tournament/
ATTACH;FMTTYPE=image/jpeg:https://rarediseases.org/wp-content/uploads/2026/06/2026-ED4EDS-golf-flyer-v4-no-char.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260827T150000
DTEND;TZID=America/New_York:20260827T160000
DTSTAMP:20260729T190424Z
CREATED:20260709T135344Z
LAST-MODIFIED:20260729T190424Z
UID:10001243-1787842800-1787846400@rarediseases.org
SUMMARY:Webinar: Innovative Approaches to Improving Your Rare Disease Care
DESCRIPTION:In an era of scientific and technological advances\, rare disease care is changing every day. Join us for a robust panel discussion diving into different approaches to navigate and improve your rare care throughout each step of your journey. \nRegister
URL:https://rarediseases.org/event/living-rare-living-stronger-summer-webinar-series-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260903T120000
DTEND;TZID=America/New_York:20260903T130000
DTSTAMP:20260812T172337Z
CREATED:20260812T172337Z
LAST-MODIFIED:20260812T172337Z
UID:10001255-1788436800-1788440400@rarediseases.org
SUMMARY:Webinar: Recognizing Rare Cancer Day Through Action
DESCRIPTION:Rare Cancer Day is an annual celebration devoted to raising awareness about rare cancers and the challenges people living with them face. This year\, Rare Cancer Day is being recognized on September 23. For the rare cancer community\, timely access to innovative diagnostic and comprehensive care can mean the difference between life and death. During this webinar\, we’ll discuss NORD’s state\, federal\, and regulatory efforts impacting the rare cancer community. We’ll also share how you can get involved and make an impact on Rare Cancer Day. \nRegister
URL:https://rarediseases.org/event/webinar-recognizing-rare-cancer-day-through-action/
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/08/Sept-2026-RAN-Webinar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260905T130000
DTEND;TZID=America/New_York:20260905T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000945-1788613200-1788618600@rarediseases.org
SUMMARY:Pericarditis Alliance Virtual Support Group Every 1st Saturday
DESCRIPTION: \nPericarditis Alliance offers a once a month virtual support group for patients and their families to check in\, connect and learn from each other. They invite speakers to talk about topics such as adopting an anti-inflammatory diet and functional medicine. At the end of each meeting\, they invite participants to join in a short meditation. \n  \nThe next Virtual Support Group meeting is September 6\, 2025 1:00 pm EST\, 10:00 am PST\, and there will be a meeting on the first Saturday of each Month. Sign up here: https://pericarditisalliance.org/events/
URL:https://rarediseases.org/event/pericarditis-alliance-virtual-support-group-every-1st-saturday/2026-09-05/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260913
DTEND;VALUE=DATE:20260914
DTSTAMP:20260630T123933Z
CREATED:20260630T123933Z
LAST-MODIFIED:20260630T123933Z
UID:10001237-1789257600-1789343999@rarediseases.org
SUMMARY:ED for EDS4 Poker Run
DESCRIPTION:ED for EDS4 presents its 1st Annual Poker Run on Sunday\, September 13 in Charlton\, MA. \nClick here to enlarge the image.
URL:https://rarediseases.org/event/ed-for-eds4-poker-run/
ATTACH;FMTTYPE=image/jpeg:https://rarediseases.org/wp-content/uploads/2026/06/Poker-Run-.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260917T120000
DTEND;TZID=America/New_York:20260917T133000
DTSTAMP:20260903T144337Z
CREATED:20260903T144251Z
LAST-MODIFIED:20260903T144337Z
UID:10001261-1789646400-1789651800@rarediseases.org
SUMMARY:Rethinking Rare Cancer Research Webinar
DESCRIPTION:Join NORD’s Rare Cancer Coalition on Thursday\, September 17 at 12 p.m. ET for a webinar focused on exploring how patient perspectives can help strengthen and improve rare cancer research ahead of Rare Cancer Day. \nExperts and patients will discuss the opportunities and challenges rare cancer patients face when participating in research and share why integrating patient perspectives is essential to advancing future studies. \nWhether you are a patient\, caregiver\, advocate\, researcher\, or healthcare professional\, this conversation will highlight the important role patient engagement plays in driving research forward and improving outcomes for the rare cancer community. \nRegister Today!
URL:https://rarediseases.org/event/rethinking-rare-cancer-research-webinar/
CATEGORIES:NORD Events,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;VALUE=DATE:20260925
DTEND;VALUE=DATE:20260927
DTSTAMP:20260717T175154Z
CREATED:20260717T175154Z
LAST-MODIFIED:20260717T175154Z
UID:10001246-1790294400-1790467199@rarediseases.org
SUMMARY:2026 Wilson Disease Association Annual Conference
DESCRIPTION:Registration is now open for the 2026 WDA Annual Conference\, taking place September 25–26 in Chicago. \nCo-hosted by Northwestern University Feinberg School of Medicine’s Wilson Disease Center of Excellence and the Wilson Disease Association\, the conference will bring together healthcare professionals\, researchers\, advocates\, industry partners\, patients\, and caregivers from across the Wilson disease community. \nThe event features a dual-track agenda\, including a physician education program for healthcare professionals and dedicated programming for patients and families. \nJoin us for two days of education\, networking\, collaboration\, and community-building with leaders across the Wilson disease field. \nEarly-bird registration is available through August 16. \nView the full agenda\, registration details\, sponsorship opportunities\, travel assistance information\, and hotel information at: https://wilsondisease.org/get-involved/events/annual-conference/ \n#WilsonDisease #RareDisease #MedicalEducation #ClinicalResearch #PatientAdvocacy
URL:https://rarediseases.org/event/2026-wilson-disease-association-annual-conference/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261001T120000
DTEND;TZID=America/New_York:20261003T143000
DTSTAMP:20261001T133752Z
CREATED:20261001T133752Z
LAST-MODIFIED:20261001T133752Z
UID:10001399-1790856000-1791037800@rarediseases.org
SUMMARY:Living Rare Living Stronger - Virtual Spanish Session October 3rd
DESCRIPTION:NORD’s free virtual event for Spanish-speaking rare disease patients and families (October 3)\n\nRegistration is now open for NORD’s first #LivingRare virtual event entirely in Spanish!  https://bit.ly/4i6JPzG\n\n\n\nJoin us Saturday\, Oct. 3\, from noon to 2:30 p.m. ET on Zoom for a free event bringing Spanish-speaking rare disease patients\, families\, and caregivers together for education and community connection.\n\n\n\nAttendees can expect expert-led information on genetics and navigating next steps after a rare disease diagnosis\, along with opportunities to connect with other patients and families.\n\n\n\nProgramming will be in Spanish\, with simultaneous live interpretation available in English.\n\n\nRegister today: https://bit.ly/4i6JPzG\n\n\nPlease share this with someone in your community who may benefit from this event.
URL:https://rarediseases.org/event/living-rare-living-stronger-virtual-spanish-session-october-3rd/
CATEGORIES:NORD Events,NORD Member Event
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261001T160000
DTEND;TZID=America/New_York:20261001T200000
DTSTAMP:20260925T121103Z
CREATED:20260710T163556Z
LAST-MODIFIED:20260925T121103Z
UID:10001244-1790870400-1790884800@rarediseases.org
SUMMARY:2nd Annual Oktoberfest - Raise a Stein for a Cause
DESCRIPTION:Join community members for an evening of celebration and purpose at our Oktoberfest-themed happy hour! Enjoy authentic German beer\, delicious food\, live music\, and exciting raffle prizes – all while supporting a powerful cause. Last year’s inaugural event raised over $50\,000 for the National Organization for Rare Disorders (NORD). \nThe Benassi family\, alongside business partners and friends\, created F-U Rare Disorders Oktoberfest as a way to give back while having some fun\, gathering the community to raise awareness and support for those impacted by rare disorders. \nClick here to enlarge the image.
URL:https://rarediseases.org/event/2nd-annual-oktoberfest-raise-a-stein-for-a-cause/
LOCATION:Buffalo Creek Brewing\, Long Grove\, IL\, 360 Historical Lane\, Long Grove\, IL\, 60047\, United States
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/07/image.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261003T120000
DTEND;TZID=America/New_York:20261003T143000
DTSTAMP:20261001T134248Z
CREATED:20261001T134248Z
LAST-MODIFIED:20261001T134248Z
UID:10001400-1791028800-1791037800@rarediseases.org
SUMMARY:Living Rare Living Stronger - Sesión virtual de español 3 de octubre
DESCRIPTION:Ya está abierta la inscripción para el primer evento virtual #LivingRare de NORD\, completamente en español! 🎉 https://bit.ly/4i6JPzG \nÚnase a nosotros el sábado 3 de octubre\, del mediodía a las 2:30 pm ET en Zoom para un evento gratuito que reúne a pacientes de enfermedades raras de habla hispana\, familias y cuidadores para educación y conexión comunitaria. \nLos asistentes pueden esperar información dirigida por expertos sobre genética y los próximos pasos después de un diagnóstico de enfermedad rara\, junto con oportunidades para conectarse con otros pacientes y familias. \nLa programación será en español\, con interpretación simultánea en inglés.\nRegístrese hoy: https://bit.ly/4i6JPzG \nPor favor\, comparte esto con alguien de tu comunidad que pueda beneficiarse de este evento.
URL:https://rarediseases.org/event/living-rare-living-stronger-sesion-virtual-de-espanol-3-de-octubre/
CATEGORIES:NORD Events,NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261003T130000
DTEND;TZID=America/New_York:20261003T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000946-1791032400-1791037800@rarediseases.org
SUMMARY:Pericarditis Alliance Virtual Support Group Every 1st Saturday
DESCRIPTION: \nPericarditis Alliance offers a once a month virtual support group for patients and their families to check in\, connect and learn from each other. They invite speakers to talk about topics such as adopting an anti-inflammatory diet and functional medicine. At the end of each meeting\, they invite participants to join in a short meditation. \n  \nThe next Virtual Support Group meeting is September 6\, 2025 1:00 pm EST\, 10:00 am PST\, and there will be a meeting on the first Saturday of each Month. Sign up here: https://pericarditisalliance.org/events/
URL:https://rarediseases.org/event/pericarditis-alliance-virtual-support-group-every-1st-saturday/2026-10-03/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261003T130000
DTEND;TZID=America/New_York:20261003T143000
DTSTAMP:20260922T155902Z
CREATED:20260922T155902Z
LAST-MODIFIED:20260922T155902Z
UID:10001334-1791032400-1791037800@rarediseases.org
SUMMARY:Pericarditis Alliance - Shares From the Collective hosted by Lisa
DESCRIPTION:Pericarditis Alliance is so pleased to offer three new monthly virtual support groups for patients and their families to check in\, connect\, and learn from each other. Registration is open for one month at a time and will be open for each group by the Friday after the previous meeting. Register for each group through the calendar below. \nPericarditis Under 30 hosted by Alexa – A group to bring much needed targeted support for the younger demographic who are hit with this disease at a time when they are still trying to figure themselves out and making plans for their future — often being forced to pivot in their career and life goals. First Sunday of the month at 12pm ET. Open to pericarditis patients under 30\, and their caregivers. \nShares From the Collective hosted by Lisa – Where participants will have the option to follow different themes and topics for a few sessions at a time while bringing their own lived experiences to the discussion to learn from and support each other. First Saturday of the month at 1pm ET. Open to all pericarditis patients and caregivers. \nPericarditis International hosted by Andy from England\, allowing us to support more patients in Europe and nearby time zones. Andy says upon getting pericarditis\, his biggest battle was fighting himself. His sessions will have a large focus on the psychological and mental health aspects of pericarditis. Second Sunday of the month at 4:30pm BST\, 11:30am ET. Open to all pericarditis patients and caregivers. \nPericarditis Speaker Series with Rachel – A professional speaker series including presentations and discussions by special guests with expertise in pericarditis lifestyle and health management\, clinical trials\, and more. These are on Mondays with dates and times TBD. Open to all pericarditis patients and caregivers. \nSupport Groups | Pericarditis Alliance
URL:https://rarediseases.org/event/pericarditis-alliance-shares-from-the-collective-hosted-by-lisa/2026-10-03/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261003T150000
DTEND;TZID=America/New_York:20261003T180000
DTSTAMP:20260923T123826Z
CREATED:20260923T123633Z
LAST-MODIFIED:20260923T123826Z
UID:10001394-1791039600-1791050400@rarediseases.org
SUMMARY:Pints for a Purpose
DESCRIPTION:Click to enlarge image \nJoin in a fun fall afternoon at Great American Beer Hall on October 3 from 3–6 PM! Come hang out\, grab a drink\, and help celebrate Bridget’s TCS New York City Marathon journey while raising money for NORD. We’ll have a signature drink\, raffles\, food\, beer\, and plenty of good times. Tickets are $20\, with proceeds going toward my fundraiser. Bring your friends\, come for a drink (or a few!)\, and spend the afternoon with us! \nTickets are $20 \nRSVP Here
URL:https://rarediseases.org/event/pints-for-a-purpose/
LOCATION:Great American Beer Hall\, Medford\, MA
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/09/Fundraiser-Bridget-Joyce.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20261004T120000
DTEND;TZID=America/New_York:20261004T133000
DTSTAMP:20260922T155610Z
CREATED:20260922T155610Z
LAST-MODIFIED:20260922T155610Z
UID:10001274-1791115200-1791120600@rarediseases.org
SUMMARY:Pericarditis Alliance Support Groups - Pericarditis Under 30 hosted by Alexa
DESCRIPTION:Pericarditis Alliance is so pleased to offer three new monthly virtual support groups for patients and their families to check in\, connect\, and learn from each other. Registration is open for one month at a time and will be open for each group by the Friday after the previous meeting. Register for each group through the calendar below. \nPericarditis Under 30 hosted by Alexa – A group to bring much needed targeted support for the younger demographic who are hit with this disease at a time when they are still trying to figure themselves out and making plans for their future — often being forced to pivot in their career and life goals. First Sunday of the month at 12pm ET. Open to pericarditis patients under 30\, and their caregivers. \nSupport Groups | Pericarditis Alliance
URL:https://rarediseases.org/event/pericarditis-alliance-support-groups-pericarditis-under-30-hosted-by-alexa/2026-10-04/
CATEGORIES:NORD Member Event
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END:VCALENDAR