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X-WR-CALDESC:Events for Canadian Rare Disease Network
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DTSTART;TZID=America/Denver:20250903T080000
DTEND;TZID=America/Denver:20250904T170000
DTSTAMP:20260409T190356
CREATED:20250618T151109Z
LAST-MODIFIED:20250618T151109Z
UID:8463-1756886400-1757005200@canadianrdn.ca
SUMMARY:2025 RARE Drug Development Symposium
DESCRIPTION:Rare disease patient advocates are taking the lead in research like never before\, driven by the urgent need for new treatments. The RARE Drug Development Symposium hosted by Global Genes in partnership with Boston Children’s Hospital is designed to equip advocates with the knowledge\, skills\, and connections to navigate early-stage research with confidence. During this 1.5 day event\, attendees will have a mix of main stage sessions\, targeted breakouts\, group presentations\, and hands-on workshopping. Whether you’re initiating research efforts or looking to refine your strategy\, this symposium offers practical insights to accelerate progress in research strategies and activities.
URL:https://canadianrdn.ca/event/2025-rare-drug-development-symposium/
CATEGORIES:Caregiver,Conferences,Healthcare,In Person,International,Patient Focused,Research Focused
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BEGIN:VEVENT
DTSTART;TZID=America/Belize:20250904T080000
DTEND;TZID=America/Belize:20250905T170000
DTSTAMP:20260409T190356
CREATED:20250827T170339Z
LAST-MODIFIED:20250827T170339Z
UID:8787-1756972800-1757091600@canadianrdn.ca
SUMMARY:6th International Hypothalamic Hamartoma Symposium
DESCRIPTION:Presented by Hope for HH and Hospital Sant Joan de Déu Barcelona\, this symposium will gather leading experts\, patients\, and caregivers from around the world to share the latest research\, clinical advances\, and treatment strategies for Hypothalamic Hamartoma (HH)! Alexis Arzimanoglou and Helen Cross are part of the Symposium Committee.
URL:https://canadianrdn.ca/event/6th-international-hypothalamic-hamartoma-symposium/
CATEGORIES:Caregiver,Clinical Trials,Conferences,In Person,International,Patient Focused,Policy,Research Focused
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250909T080000
DTEND;TZID=America/Edmonton:20250910T170000
DTSTAMP:20260409T190356
CREATED:20250723T141417Z
LAST-MODIFIED:20250723T141417Z
UID:8591-1757404800-1757523600@canadianrdn.ca
SUMMARY:Rare Trials Summit
DESCRIPTION:Bringing together key stakeholders in the clinical research community to accelerate the development of new rare disease therapies from average 10-12 years to under 3 years.
URL:https://canadianrdn.ca/event/rare-trials-summit/
CATEGORIES:Clinical Trials,Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250916T080000
DTEND;TZID=Europe/London:20250919T170000
DTSTAMP:20260409T190356
CREATED:20250520T192354Z
LAST-MODIFIED:20250520T192354Z
UID:8304-1758009600-1758301200@canadianrdn.ca
SUMMARY:Manchester Dysmorphology and Developmental Disorders Conference
DESCRIPTION:The Manchester Dysmorphology Conference (MDC) is a biennial event that has brought together global experts in genomic syndromology since 1984. Established by Professor Dian Donnai\, MDC promotes the exchange of knowledge and ideas to advance the understanding of developmental disorders and congenital malformations. Each conference offers leading-edge content and a supportive setting\, encouraging discussions\, building collaborations\, and inspiring innovative strategies to improve the lives of individuals living with rare conditions.
URL:https://canadianrdn.ca/event/manchester-dysmorphology-and-developmental-disorders-conference/
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Research Focused
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250918T180000
DTEND;TZID=America/Edmonton:20250918T190000
DTSTAMP:20260409T190356
CREATED:20250916T184602Z
LAST-MODIFIED:20250916T184602Z
UID:8894-1758218400-1758222000@canadianrdn.ca
SUMMARY:EURORDIS Webinar: Patient Partnership 2025 – The Lupus100 Project
DESCRIPTION:The Lupus100 Project\, recognized as a winner of the 2025 Patient Partnership Good Practice Challenge\, highlights the crucial role of patient partnership in improving communication about rare diseases such as lupus.
URL:https://canadianrdn.ca/event/eurordis-webinar-patient-partnership-2025-the-lupus100-project/
CATEGORIES:Caregiver,International,Patient Focused,Research Focused,Virtual,Webinars
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250921T080000
DTEND;TZID=America/Chicago:20250924T170000
DTSTAMP:20260409T190356
CREATED:20250827T161756Z
LAST-MODIFIED:20250827T161756Z
UID:8771-1758441600-1758733200@canadianrdn.ca
SUMMARY:Undiagnosed Hackathon 2025
DESCRIPTION:350 million people live with an undiagnosed disease worldwide. Genome sequencing can provide answers for 40% of the People Living With Undiagnosed Disease (PLWUD) but around 60% still don’t receive a diagnosis. The purpose of the Undiagnosed Hackathon is trying to find new ways and collaborations to solve the undiagnosed diseases\, that can’t be solved today. In this unique event multidisciplinary teams of clinicians\, bioinformaticians/molecular biologists\, scientists\, developers\, AI specialists and brilliant minds will work together to tackle the most difficult diseases.
URL:https://canadianrdn.ca/event/undiagnosed-hackathon-2025/
CATEGORIES:Caregiver,Clinical Trials,Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/08/Undiagnosed-Hackathon-logo-1.png
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250923T093000
DTEND;TZID=America/Edmonton:20250923T113000
DTSTAMP:20260409T190356
CREATED:20250916T184831Z
LAST-MODIFIED:20250916T184831Z
UID:8897-1758619800-1758627000@canadianrdn.ca
SUMMARY:Advancing Rare Disease Healthcare: Spotlighting the Economic and Health System Burden of Disease
DESCRIPTION:Please join this 1.5-hour live virtual meeting to hear esteemed faculty describe the global economic impact of rare diseases on patients and healthcare systems. Expert community advocates will also share their practical experience of advancing patients’ needs with key stakeholders. Panel discussion and audience questions will consider how to have meaningful impact in your country or region with patient healthcare experience data and insights to drive change in practice and better health outcomes for people living with rare disease. The live virtual meeting is further supplemented with published studies and content.
URL:https://canadianrdn.ca/event/advancing-rare-disease-healthcare-spotlighting-the-economic-and-health-system-burden-of-disease/
CATEGORIES:Caregiver,International,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/09/1757616693554.jpg
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250926T080000
DTEND;TZID=America/Edmonton:20250928T170000
DTSTAMP:20260409T190356
CREATED:20250520T191324Z
LAST-MODIFIED:20250520T191324Z
UID:8291-1758873600-1759078800@canadianrdn.ca
SUMMARY:Biennial National Conference
DESCRIPTION:Registration information coming soon.
URL:https://canadianrdn.ca/event/biennial-national-conference/
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,National,Patient Focused,Policy,Research Focused
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