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X-WR-CALNAME:National Organization for Rare Disorders
X-ORIGINAL-URL:https://rarediseases.org
X-WR-CALDESC:Events for National Organization for Rare Disorders
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TZID:America/New_York
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DTSTART:20251102T060000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260615
DTEND;VALUE=DATE:20260616
DTSTAMP:20260529T163811Z
CREATED:20260529T163811Z
LAST-MODIFIED:20260529T163811Z
UID:10001231-1781481600-1781567999@rarediseases.org
SUMMARY:2026-2027 NPKUA Grant Program
DESCRIPTION:National PKU Alliance (NPKUA) supports an annual grant program to fund the most critical projects working to improve the lives of individuals with PKU. The 2026-2027 NPKUA Grant Program is now accepting proposals for funding for PKU research. \nEligible applicants must have an advanced degree(s) and hold a position at an established clinical/academic/research institution. Investigators early in their career are encouraged to apply. Please note that representatives working at a for-profit industry company working on PKU are not eligible to apply. See the complete request for proposals here. \nApplications may be submitted at https://npkua.grantplatform.com/. All applications must be submitted by Monday\, June 15\, 2026\, at 11:59pm ET. Late applications will not be accepted for review
URL:https://rarediseases.org/event/2026-2027-npkua-grant-program/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260617
DTEND;VALUE=DATE:20260621
DTSTAMP:20260608T141144Z
CREATED:20260608T141144Z
LAST-MODIFIED:20260608T141144Z
UID:10001234-1781654400-1781999999@rarediseases.org
SUMMARY:United Mitochondrial Disease Foundation's Mitochondrial Medicine Conference 2026 -- June 17-20 in Orlando
DESCRIPTION:NORD member @United Mitochondrial Disease Foundation’s Mitochondrial Medicine Conference 2026 — June 17-20 in Orlando — brings together families and global leaders\, scientists\, and clinicians for four days of cutting-edge research\, emerging therapies\, and meaningful collaboration with patients to accelerate progress toward a cure. Patients and families can connect with top specialists\, join educational sessions and “Ask the Mito Doc” panels\, and find community\, resources\, and support through a dedicated three-day family program. Learn more at www.umdfconference.org.
URL:https://rarediseases.org/event/united-mitochondrial-disease-foundations-mitochondrial-medicine-conference-2026-june-17-20-in-orlando/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260617T130000
DTEND;TZID=America/New_York:20260617T140000
DTSTAMP:20260522T162133Z
CREATED:20260522T162133Z
LAST-MODIFIED:20260522T162133Z
UID:10001230-1781701200-1781704800@rarediseases.org
SUMMARY:Webinar: Effective Lawmaker Engagement for Rare Disease Advocates
DESCRIPTION:Building strong relationships with lawmakers is one of the most effective ways to advance rare disease policy and ensure the needs of our community are heard. The time between legislative sessions can be one of the most valuable opportunities to establish meaningful\, lasting relationships with elected officials and their staff. During this webinar\, we’ll teach you how to build and nourish relationships with your state lawmakers. We’ll also discuss strategies for engaging members of Congress ahead of the 2026 midterm elections when lawmakers are often spending more time in their home districts and seeking opportunities to connect with constituents.   \nRegister Here
URL:https://rarediseases.org/event/webinar-effective-lawmaker-engagement-for-rare-disease-advocates/
CATEGORIES:Advocate,For Clinicians and Researchers,For Patient Organizations,For Patients and Families,NORD Events,Rare Action Network Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260620T150000
DTEND;TZID=America/New_York:20260620T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000839-1781967600-1781974800@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/2026-06-20/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260704T130000
DTEND;TZID=America/New_York:20260704T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000943-1783170000-1783175400@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/2026-07-04/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260707T180000
DTEND;TZID=America/New_York:20260707T190000
DTSTAMP:20260630T154915Z
CREATED:20260630T154009Z
LAST-MODIFIED:20260630T154915Z
UID:10001240-1783447200-1783450800@rarediseases.org
SUMMARY:Students for Rare New Chapter Info Session - July
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 July session will take place on July 7 at 6:00 p.m. ET. We look forward to seeing you there!\nRegister Here
URL:https://rarediseases.org/event/students-for-rare-new-chapter-info-session-july/
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/06/Students-for-Rare-Info-Session-Social-Graphic.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260709
DTEND;VALUE=DATE:20260710
DTSTAMP:20260630T125859Z
CREATED:20260630T125859Z
LAST-MODIFIED:20260630T125859Z
UID:10001238-1783555200-1783641599@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;VALUE=DATE:20260709
DTEND;VALUE=DATE:20260712
DTSTAMP:20260601T191033Z
CREATED:20260529T175042Z
LAST-MODIFIED:20260601T191033Z
UID:10001232-1783555200-1783814399@rarediseases.org
SUMMARY:NNPDF Family Support and Medical Conference
DESCRIPTION:About the Conference\n\n\n\n\nMore about the event here: https://nnpdf.org/conf/ \nEach year\, the NNPDF community gathers for something truly special\, a chance to reconnect\, welcome new families\, and share the journey with people who genuinely understand life with Niemann-Pick disease. Our annual conference is filled with meaningful conversations\, lasting friendships\, and the kind of support that reminds you that you are not alone. Families leave feeling encouraged\, informed\, and deeply connected. \nLeading researchers and clinicians join us to share clinical updates while listening and learning from families. Together\, we are building hope\, strengthening our community\, and moving closer to better treatments and one day\, a cure.
URL:https://rarediseases.org/event/nnpdf-family-support-and-medical-conferencw/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260716
DTEND;VALUE=DATE:20260720
DTSTAMP:20260126T213036Z
CREATED:20260126T213036Z
LAST-MODIFIED:20260126T213036Z
UID:10001101-1784160000-1784505599@rarediseases.org
SUMMARY:National PKU Alliance’s “Living Our Best PKU Life” Community Conference
DESCRIPTION:You’re invited to attend National PKU Alliance’s “Living Our Best PKU Life” Community Conference\, taking place Thursday\, July 16\, through Sunday\, July 19\, 2026\, in Lombard\, Illinois\, a suburb of Chicago. This family-friendly event\, held at the Westin Chicago Lombard\, is NPKUA’s largest PKU gathering in the country and invites anyone touched by PKU\, including individuals living with PKU\, families and caregivers\, clinicians\, researchers and industry partners. \nThe conference will feature engaging educational sessions\, a Kids Zone for children ages 12 and under\, including newborns and toddlers\, a Teen Zone for teens ages 13 to 17\, a Celebration Dinner and Dance Party\, and many opportunities to connect\, learn and have fun! \nEarly bird registration is available now through March 31 or until the conference sells out. Visit npkua.org/community-conference to learn more and register\, or contact conference@npkua.org with any questions. 
URL:https://rarediseases.org/event/national-pku-alliances-living-our-best-pku-life-community-conference/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260718T150000
DTEND;TZID=America/New_York:20260718T170000
DTSTAMP:20250530T155037Z
CREATED:20250530T155037Z
LAST-MODIFIED:20250530T155037Z
UID:10000840-1784386800-1784394000@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/2026-07-18/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260719T170000
DTEND;TZID=America/New_York:20260719T220000
DTSTAMP:20260403T192110Z
CREATED:20260403T192110Z
LAST-MODIFIED:20260403T192110Z
UID:10001218-1784480400-1784498400@rarediseases.org
SUMMARY:The TBCK Foundation “Black Ties for Rare”
DESCRIPTION:The TBCK Foundation is excited to host “Black Ties for Rare”\, a family-friendly gala to honor and celebrate those affected by rare diseases. They warmly invite you to join on Sunday\, July 19\, from 5-10 PM at the Hyatt Regency Aurora\, CO for an evening of connection\, storytelling\, and community. \n  \n“Get ready for an unforgettable evening in person\, celebrating rare causes with style and heart. Dress up\, mingle\, and enjoy a night full of fun\, inspiration\, and good vibes. Whether you’re here to support or just have a great time\, this gala is the place to be. Don’t miss out on the chance to make memories and connections that matter! \nBook your stay in our room block to be close to the action and get a discount – https://www.hyatt.com/events/en-US/group-booking/DENHY/G-7FCR \nIf you are planning to attend both the Snowflakes in July TBCK Conference AND the Black Ties for Rare Gala 2026\, please visit the conference site for bundled tickets – https://www.eventbrite.com/e/tbck-conference-2026-snowflakes-in-july-tickets-1981484344013?aff=oddtdtcreator”
URL:https://rarediseases.org/event/the-tbck-foundation-black-ties-for-rare/
CATEGORIES:NORD Member Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260722T130000
DTEND;TZID=America/New_York:20260722T140000
DTSTAMP:20260630T145243Z
CREATED:20260630T145143Z
LAST-MODIFIED:20260630T145243Z
UID:10001239-1784725200-1784728800@rarediseases.org
SUMMARY:Webinar: State Legislative Session Recap
DESCRIPTION:As state legislative sessions wind down\, join NORD’s Rare Action Network (RAN) for an end of session policy & advocacy wrap up. During this webinar\, we’ll discuss bills we tracked across the country\, celebrate our hard-fought advocacy wins\, and identify key opportunities for growth and improvement. We’ll also discuss potential areas of focus as we head towards 2027! \nRegister Here
URL:https://rarediseases.org/event/webinar-state-legislative-session-recap/
ATTACH;FMTTYPE=image/png:https://rarediseases.org/wp-content/uploads/2026/06/July-RAN-Webinar-State-Legislative-Session-Recap.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260723
DTEND;VALUE=DATE:20260726
DTSTAMP:20260226T155850Z
CREATED:20260226T155831Z
LAST-MODIFIED:20260226T155850Z
UID:10001173-1784764800-1785023999@rarediseases.org
SUMMARY:Hydrocephalus Association HA CONNECT
DESCRIPTION:The Hydrocephalus Association will host HA CONNECT\, its 19th Annual National Conference on Hydrocephalus\, in Indianapolis from July 23–25\, 2026. Families\, clinicians\, researchers\, and industry leaders will gather to connect\, learn\, and explore the latest advancements in hydrocephalus treatment\, management\, and everyday living. hydrocephalusconference.org
URL:https://rarediseases.org/event/hydrocephalus-association-ha-connect/
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: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: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;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: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;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;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: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;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: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: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: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
END:VCALENDAR