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X-ORIGINAL-URL:https://rarediseases.org
X-WR-CALDESC:Events for National Organization for Rare Disorders
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260226
DTEND;VALUE=DATE:20270101
DTSTAMP:20260226T184751Z
CREATED:20260226T184751Z
LAST-MODIFIED:20260226T184751Z
UID:10001176-1772064000-1798761599@rarediseases.org
SUMMARY:MPN Research Foundation Global Patient Unmet Needs Assessment
DESCRIPTION:2026 Global Patient Unmet Needs Assessment is open! @MPNResearch Foundation invites individuals living with a myeloproliferative neoplasm (MPN) to participate in the 2026 Global Patient Unmet Needs Assessment. Your insights help guide future research\, improve resources\, and highlights where unmet needs remain for those living with MPNs worldwide. \nTopics include:\n• MPN diagnosis & monitoring\n• Therapies & clinical trials\n• Symptoms & related conditions\n• Access to information & resources\n• Emotional health & quality of life \nTake the assessment: \nhttps://www.tfaforms.com/5184100\nPreview 2024 assessment highlights:\nhttps://mpnresearchfoundation.org/mpn-unmet-needs-assessment-preview/\nPreliminary results will be shared in Summer 2026. Please share widely — especially with international MPN communities — to help identify unmet needs worldwide.
URL:https://rarediseases.org/event/mpn-research-foundation-global-patient-unmet-needs-assessment/
CATEGORIES:NORD Member Event
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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;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
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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;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
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