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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;VALUE=DATE:20260529
DTEND;VALUE=DATE:20260603
DTSTAMP:20260202T220753Z
CREATED:20260202T220753Z
LAST-MODIFIED:20260202T220753Z
UID:10001124-1780012800-1780444799@rarediseases.org
SUMMARY:Rare Cancer Coalition at ASCO! 
DESCRIPTION:Rare Cancer Coalition at ASCO!\nMay 29 – June 2\, Chicago\, IL  \nThe Rare Cancer Coalition will have a booth in the Patient Advocacy Pavilion at the American Society of Clinical Oncology Annual Meeting\, where we’ll be engaging with patients\, caregivers\, and oncology professionals to share resources and highlight the rare community. Visit us to learn how we support our network of Rare Cancer Coalition members as they drive research and advocate for policies that improve outcomes for the rare cancer community.  
URL:https://rarediseases.org/event/rare-cancer-coalition-at-asco/
CATEGORIES:NORD Member Event
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260606T130000
DTEND;TZID=America/New_York:20260606T143000
DTSTAMP:20250828T212000Z
CREATED:20250828T212000Z
LAST-MODIFIED:20250828T212000Z
UID:10000942-1780750800-1780756200@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/2026-06-06/
CATEGORIES:NORD Member Event
END:VEVENT
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
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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
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