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X-WR-CALNAME:Canadian Rare Disease Network
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X-WR-CALDESC:Events for Canadian Rare Disease Network
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DTSTART:20261101T060000
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TZID:America/Toronto
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20240310T070000
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DTSTART:20250309T070000
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TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
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DTSTART:20260308T070000
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DTSTART:20261101T060000
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BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250531T080000
DTEND;TZID=America/Edmonton:20250531T163000
DTSTAMP:20260404T063901
CREATED:20250526T204245Z
LAST-MODIFIED:20250526T204245Z
UID:8325-1748678400-1748709000@canadianrdn.ca
SUMMARY:XLID98 1st Annual Conference 2025
DESCRIPTION:
URL:https://canadianrdn.ca/event/xlid98-1st-annual-conference-2025/
CATEGORIES:Events,National,Patient Focused,Research Focused,Virtual
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/05/1747841039325.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250607T080000
DTEND;TZID=America/New_York:20250607T170000
DTSTAMP:20260404T063901
CREATED:20250122T001108Z
LAST-MODIFIED:20250122T001108Z
UID:7394-1749283200-1749315600@canadianrdn.ca
SUMMARY:Wilson Disease Event for patients\, families\, and caregivers
DESCRIPTION:The newly formed Canadian chapter of Wilson Disease Association is hosting a one day conference for WD patients\, caregivers\, friends\, medical students\, physicians and supporters. \nThey are bringing together the top Canadian doctors who treat Wilson disease. \nGreat opportunity to network and learn more about treatment options for Wilson disease. \nMore details and registration link coming soon. \nOpen to everyone interested in learning more about this rare genetic disorder. \nFor more information\, visit alice.williams@wilsonsdisease.org.
URL:https://canadianrdn.ca/event/wilson-disease-event-for-patients-families-and-caregivers/
CATEGORIES:Caregiver,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250612T160000
DTEND;TZID=America/Edmonton:20250612T170000
DTSTAMP:20260404T063901
CREATED:20250520T191546Z
LAST-MODIFIED:20250520T191546Z
UID:8295-1749744000-1749747600@canadianrdn.ca
SUMMARY:Community Conversation: The Living Rare Study
DESCRIPTION:Join NORD on Thursday\, June 12 at 4 p.m. ET for a virtual conversation about the #LivingRareStudy. This session will guide you through joining the first large-scale study in the U.S. focused on tracking the real-life experiences of individuals and caregivers impacted by #RareDiseases\, including how to create an #IAMRARE account\, review the consent form\, and navigate the platform.
URL:https://canadianrdn.ca/event/community-conversation-the-living-rare-study/
CATEGORIES:Caregiver,Events,Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/05/1747765981496.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250618T120000
DTEND;TZID=America/Edmonton:20250618T130000
DTSTAMP:20260404T063901
CREATED:20250526T204049Z
LAST-MODIFIED:20250526T204049Z
UID:8322-1750248000-1750251600@canadianrdn.ca
SUMMARY:Webinar - Key Considerations for Including Pediatric Populations with Neurodevelopmental Conditions in Clinical Trials
DESCRIPTION:Speakers: Evdokia Anagnostou and Mayada Elsabbagh Title: Key considerations for including pediatric populations with neurodevelopmental conditions in clinical trials
URL:https://canadianrdn.ca/event/webinar-key-considerations-for-including-pediatric-populations-with-neurodevelopmental-conditions-in-clinical-trials/
CATEGORIES:Clinical Trials,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/05/1748012679658.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250618T123000
DTEND;TZID=America/Edmonton:20250618T140000
DTSTAMP:20260404T063901
CREATED:20250618T150444Z
LAST-MODIFIED:20250618T150444Z
UID:8457-1750249800-1750255200@canadianrdn.ca
SUMMARY:ALS Canada: Webinar-Driving Progress Forward
DESCRIPTION:In anticipation of Global ALS Awareness Day on June 21\, join ALS Canada’s CEO Tammy Moore and the ALS Canada Team for a free\, insightful webinar. Discover the comprehensive services and programs ALS Canada offers to Canadians living with and affected by ALS. \nThis engaging session will cover all mission areas\, including community services\, advocacy\, research\, and knowledge exchange\, showcasing the extensive resources available nationwide.
URL:https://canadianrdn.ca/event/als-canada-webinar-driving-progress-forward/
CATEGORIES:Caregiver,Healthcare,Patient Focused,Policy,Provincial,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/06/GtkfXV9WMAAP6DY.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Kentucky/Louisville:20250621T080000
DTEND;TZID=America/Kentucky/Louisville:20250621T170000
DTSTAMP:20260404T063901
CREATED:20250421T223116Z
LAST-MODIFIED:20250421T223116Z
UID:8030-1750492800-1750525200@canadianrdn.ca
SUMMARY:Mito Med 2025 Masterclass on Primary Mitochondrial Myopathy with a Focus on TK2d
DESCRIPTION:New this year for Clinical-Scientific Attendees to UMDF’s #MitoMed Conference — a Masterclass on Primary Mitochondrial Myopathy (#PMM) with a Focus on #TK2d. Tracks for Early Career Investigators and for Up-and-Coming Clinicians.
URL:https://canadianrdn.ca/event/mito-med-2025-masterclass-on-primary-mitochondrial-myopathy-with-a-focus-on-tk2d/
CATEGORIES:Events,International,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/04/GndfV5aWwAAtTgH.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250623T160000
DTEND;TZID=America/Edmonton:20250623T170000
DTSTAMP:20260404T063901
CREATED:20250618T145940Z
LAST-MODIFIED:20250618T145940Z
UID:8451-1750694400-1750698000@canadianrdn.ca
SUMMARY:Defeat Duchenne Canada-Industry Partner Update: REGENXBIO
DESCRIPTION:Join Defeat Duchenne Canada for an educational webinar featuring Dr. Jahannaz Dastgir\, Executive Director of Clinical Development at REGENXBIO\, as she shares the latest updates on RGX-202\, an investigational gene therapy for the treatment of Duchenne muscular dystrophy\, and their Phase 1/2/3 AFFINITY DUCHENNE® trial. \nThis session will provide valuable insights into the science behind RGX-202\, trial progress\, and what this potential investigational treatment could mean for the Duchenne community. Whether you are a parent\, caregiver\, clinician\, or advocate\, this webinar is an opportunity to stay informed and ask questions directly to the team leading this important research.
URL:https://canadianrdn.ca/event/defeat-duchenne-canada-industry-partner-update-regenxbio/
CATEGORIES:Caregiver,Clinical Trials,Healthcare,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/06/Gs8jXy9WYAA0ZX1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250708T170000
DTEND;TZID=America/Toronto:20250708T180000
DTSTAMP:20260404T063901
CREATED:20250625T030048Z
LAST-MODIFIED:20250625T030100Z
UID:8481-1751994000-1751997600@canadianrdn.ca
SUMMARY:NMD Rounds & Educational Webinars-Bulbar impact of SMA: approach to assessment and treatment
DESCRIPTION:NMD4C and MDC are pleased to invite you to a CPD-accredited webinar Bulbar impact of SMA: approach to assessment and treatment. NMD4C and MDC are providing organizational and technical support. This webinar is supported by Novartis through a restricted educational sponsorship with no involvement or influence on program content.
URL:https://canadianrdn.ca/event/nmd-rounds-educational-webinars-bulbar-impact-of-sma-approach-to-assessment-and-treatment/
CATEGORIES:Healthcare,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/06/July8NMD4C_BulbarImpactSMA-scaled-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250721T070000
DTEND;TZID=America/Edmonton:20250721T080000
DTSTAMP:20260404T063901
CREATED:20250625T032740Z
LAST-MODIFIED:20250625T032740Z
UID:8487-1753081200-1753084800@canadianrdn.ca
SUMMARY:Rare Disease Day 2026 - Concept Introduction
DESCRIPTION:Company representatives and Rare Disease Day National Partners are warmly invited to this introductory session unveiling the vision for the 2026 campaign.
URL:https://canadianrdn.ca/event/rare-disease-day-2026-concept-introduction/
CATEGORIES:International,Patient Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/06/Zoom-Events-RDD-Feature-Image.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250721T120000
DTEND;TZID=America/Toronto:20250721T130000
DTSTAMP:20260404T063901
CREATED:20250625T030325Z
LAST-MODIFIED:20250625T030325Z
UID:8484-1753099200-1753102800@canadianrdn.ca
SUMMARY:IMPaCT Webinar - An Overview of Current and Future Clinical Trials in Children: a European Perspective
DESCRIPTION:Dr. Eva Degraeuwe (MD-PhD) is a dedicated pediatric resident and researcher in pediatric nephrology and global clinical trial optimilisation. Working in many Global networks focused on rare and low prevalance diseases\, she has completed her PhD in 2024 participating and guiding over 35 clinical trials. Moreover\, she has a passion for patient engagement\, especially within a clinical trial setting. \nWebinar Overview: \n– European network setting and the role of networks \n– Pathways to clinical trial optimilisation \n– Patient engagement and what has been achieved
URL:https://canadianrdn.ca/event/impact-webinar-an-overview-of-current-and-future-clinical-trials-in-children-a-european-perspective/
CATEGORIES:Clinical Trials,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/06/IMPaCTWebinarJune.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250730T120000
DTEND;TZID=America/Edmonton:20250730T130000
DTSTAMP:20260404T063901
CREATED:20250722T203941Z
LAST-MODIFIED:20250722T203941Z
UID:8584-1753876800-1753880400@canadianrdn.ca
SUMMARY:Community of Practice- Beyond Inclusion: Co-Designing with Lived Experience to Build Meaningful Partnerships in Stroke Research
DESCRIPTION:📢 On July 30th from 12:00 – 1:00 pm EST Emine Kocabas\, Ashley Berger\, & Vishma Sookdeo will be speaking about “Beyond Inclusion: Co-Designing with Lived Experience to Build Meaningful Partnerships in Stroke Research”.
URL:https://canadianrdn.ca/event/community-of-practice-beyond-inclusion-co-designing-with-lived-experience-to-build-meaningful-partnerships-in-stroke-research/
CATEGORIES:Healthcare,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/07/1753191975283.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250813T130000
DTEND;TZID=America/Edmonton:20250813T150000
DTSTAMP:20260404T063901
CREATED:20250729T162316Z
LAST-MODIFIED:20250729T162316Z
UID:8607-1755090000-1755097200@canadianrdn.ca
SUMMARY:ALS Canada: Driving & ALS Webinar
DESCRIPTION:Join ALS Canada and Sunnybrook Health Sciences Centre to learn about the impact of ALS on driving ability\, adaptive driving equipment\, how an ALS diagnosis may affect insurance\, and available alternative options.
URL:https://canadianrdn.ca/event/als-canada-driving-als-webinar/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/07/GxB7vNBW0AI1BWE.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250813T180000
DTEND;TZID=America/Edmonton:20250813T200000
DTSTAMP:20260404T063901
CREATED:20250728T214152Z
LAST-MODIFIED:20250728T214152Z
UID:8598-1755108000-1755115200@canadianrdn.ca
SUMMARY:PxP Africa 2025: Virtual Meeting August 13\, 2025 From Research Participants to Patient Partners in Research: Centering African Patients Voices
DESCRIPTION:PxP Africa is the first regional PxP meeting\, led by Joab Wako and Kwanele Asante who are members of the 2025 steering committee for the global PxP conference taking place in September. PxP Africa will spotlight the critical role of patient partners—especially African patients—as active contributors in research\, not just research participants. The session will challenge the traditional top-down model of research and explore how lived experience can inform\, shape\, and lead meaningful\, inclusive studies.
URL:https://canadianrdn.ca/event/pxp-africa-2025-virtual-meeting-august-13-2025-from-research-participants-to-patient-partners-in-research-centering-african-patients-voices/
CATEGORIES:International,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/07/GwjyWBlbQAEkCpf.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250819T080000
DTEND;TZID=America/Edmonton:20250819T090000
DTSTAMP:20260404T063901
CREATED:20250729T164703Z
LAST-MODIFIED:20250729T164703Z
UID:8610-1755590400-1755594000@canadianrdn.ca
SUMMARY:PxP Australia 2025
DESCRIPTION:PxP Australia is a regional webinar\, led by Letisha Living and Janelle Bowden who are members of the 2025 steering committee for the global PxP conference taking place in September. The theme of PxP Australia is “working well together” and Dr. Joan Carlini will be joining the session as a speaker.
URL:https://canadianrdn.ca/event/pxp-australia-2025/
CATEGORIES:International,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/07/GxCMjC_bUAIXkYa.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250819T120000
DTEND;TZID=America/Edmonton:20250819T133000
DTSTAMP:20260404T063901
CREATED:20250812T200201Z
LAST-MODIFIED:20250812T200201Z
UID:8741-1755604800-1755610200@canadianrdn.ca
SUMMARY:Genome Editing in Stem Cells and Regenerative Medicine
DESCRIPTION:CRISPR-based genome editing has revolutionized biomedical research\, offering powerful tools to investigate gene function\, model diseases\, and develop novel therapies. This focused workshop will provide participants with both theoretical grounding and practical insights into current genome editing technologies. \nThe Stem Cell Network (SCN) is pleased to offer the online workshop “Genome Editing in Stem Cells and Regenerative Medicine”. This workshop will equip participants with both a theoretical grounding and practical insights into current genome editing technologies. It will also explore key concepts in experimental design\, delivery\, and selection methods.
URL:https://canadianrdn.ca/event/genome-editing-in-stem-cells-and-regenerative-medicine/
CATEGORIES:National,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/08/1752150318229.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250827T000000
DTEND;TZID=America/Edmonton:20250827T000000
DTSTAMP:20260404T063901
CREATED:20250827T165451Z
LAST-MODIFIED:20250827T165535Z
UID:8777-1756252800-1756252800@canadianrdn.ca
SUMMARY:Webinar: Patient Partnership 2025 – The Lupus100 Project
DESCRIPTION:Co-developed by ERN ReCONNET and LUPUS EUROPE\, The Lupus100 Project is a multilingual resource based on real patient questions about lupus\, turning a national patient booklet into a Europe-wide\, medically validated information tool. Speakers Eric Hachulla (clinician\, ERN ReCONNET)\, Jeanette Andersen (patient representative\, ERN ReCONNET)\, and Zoe Karakikla-Mitsakou (General Secretary\, Lupus Europe) will share how meaningful collaboration between patients and clinicians shaped this impactful communication initiative!
URL:https://canadianrdn.ca/event/webinar-patient-partnership-2025-the-lupus100-project/
CATEGORIES:Caregiver,International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/08/Lupus100-Webinar-FT-2048x640-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250828T060000
DTEND;TZID=America/Edmonton:20250828T073000
DTSTAMP:20260404T063901
CREATED:20250728T213522Z
LAST-MODIFIED:20250728T213535Z
UID:8595-1756360800-1756366200@canadianrdn.ca
SUMMARY:WHA Resolution Coalition Webinar: Turning the WHA Resolution on Rare Diseases into Action
DESCRIPTION:This Coalition webinar will further discuss the formalization of the Coalition as well as the updates and next steps in the implementation of the WHA Resolution on Rare Diseases and the development of the Global Action Plan.
URL:https://canadianrdn.ca/event/wha-resolution-coalition-webinar-turning-the-wha-resolution-on-rare-diseases-into-action/
CATEGORIES:Hybrid,International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/07/1753701477773.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250904T110000
DTEND;TZID=America/Edmonton:20250904T120000
DTSTAMP:20260404T063901
CREATED:20250902T192015Z
LAST-MODIFIED:20250902T192015Z
UID:8836-1756983600-1756987200@canadianrdn.ca
SUMMARY:Back-to-School with PH: Q&A Session
DESCRIPTION:Getting ready for a new school year can be exciting—but also challenging when pulmonary hypertension (PH) is part of the picture. \nJoin in on Thursday\, Sept 4 at 11:00 AM EST for a virtual round table with Janette Reyes\, PH Pediatric Nurse at SickKids Hospital.
URL:https://canadianrdn.ca/event/back-to-school-with-ph-qa-session/
CATEGORIES:Caregiver,Patient Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/09/1756317681290.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250910T100000
DTEND;TZID=America/Edmonton:20250910T110000
DTSTAMP:20260404T063901
CREATED:20250722T203504Z
LAST-MODIFIED:20250722T203504Z
UID:8581-1757498400-1757502000@canadianrdn.ca
SUMMARY:IMPaCT Webinar: Lessons Learned from the Innovative Pediatric Clinical Trials (iPCT) Network
DESCRIPTION:Speakers: Tannis Erickson & Naveen Poonai Title: Lessons Learned from the Innovative Pediatric Clinical Trials (iPCT) Network
URL:https://canadianrdn.ca/event/impact-webinar-lessons-learned-from-the-innovative-pediatric-clinical-trials-ipct-network/
CATEGORIES:Clinical Trials,National,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2025/07/Septemberwebinar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250917T140000
DTEND;TZID=America/Toronto:20250917T150000
DTSTAMP:20260404T063901
CREATED:20250916T185523Z
LAST-MODIFIED:20250916T185523Z
UID:8906-1758117600-1758121200@canadianrdn.ca
SUMMARY:RareKids-CAN-Education Session: Family Engagement in Research Fundamentals
DESCRIPTION:Join RareKids-CAN on September 17\, 2025\, from 2-3pm ET for their next education session\, led by their Patient and Family Engagement Facilitators. This session is open to everyone interested in strengthening engagement practices. Don’t miss out!
URL:https://canadianrdn.ca/event/rarekids-can-education-session-family-engagement-in-research-fundamentals/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/09/1758037684535.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250918T180000
DTEND;TZID=America/Edmonton:20250918T190000
DTSTAMP:20260404T063901
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
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/09/1757432391221.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250919T150000
DTEND;TZID=America/Edmonton:20250919T170000
DTSTAMP:20260404T063901
CREATED:20250916T184302Z
LAST-MODIFIED:20250916T184302Z
UID:8891-1758294000-1758301200@canadianrdn.ca
SUMMARY:LHON Awareness Day 2025 Webinar: "Exploring the Power of Nutrition in Mitochondrial Diseases"
DESCRIPTION:This year’s theme focuses on how nutrition can support mitochondrial health. You’ll hear from experts across Australia\, Italy\, and Brazil\, sharing practical strategies and the latest research relevant to LHON and other types of mito.
URL:https://canadianrdn.ca/event/lhon-awareness-day-2025-webinar-exploring-the-power-of-nutrition-in-mitochondrial-diseases/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/09/1756391764881.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250923T093000
DTEND;TZID=America/Edmonton:20250923T113000
DTSTAMP:20260404T063901
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20250924T100000
DTEND;TZID=America/Edmonton:20250924T120000
DTSTAMP:20260404T063901
CREATED:20250814T153021Z
LAST-MODIFIED:20250814T153021Z
UID:8751-1758708000-1758715200@canadianrdn.ca
SUMMARY:La dysferlinopathie: Une dystrophie musculaire affectant le muscle strié
DESCRIPTION:1st episode of the RQMO – RARE webinar series. QC presented by Camille Bouchard\, PhD student in molecular medicine in the laboratory of Professor Jacques P. Tremblay\, Université Laval \nModerator: Jonathan Pratt\, Executive Director of the RQMO
URL:https://canadianrdn.ca/event/la-dysferlinopathie-une-dystrophie-musculaire-affectant-le-muscle-strie/
CATEGORIES:National,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/08/1755177496772.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20251001T130000
DTEND;TZID=America/Toronto:20251001T160000
DTSTAMP:20260404T063901
CREATED:20250916T185043Z
LAST-MODIFIED:20250916T185043Z
UID:8900-1759323600-1759334400@canadianrdn.ca
SUMMARY:Canadian Rare Disease Symposium: Preparing for Clinical Trials – International Regulatory Insights\, and cGMP Gene Therapy Manufacturing capabilities in Canada
DESCRIPTION:The Stem Cell Network (SCN) and the National Research Council Canada (NRC) are excited to contribute to the national conversation on cell and gene therapy for rare diseases. Building on the 2024 event titled “Canadian Rare Disease Ecosystem Symposium: Genetic Therapies for Rare Disease”\, SCN and NRC are pleased to invite you to the Canadian Rare Disease Symposium: Preparing for Clinical Trials – International Regulatory Insights\, and cGMP Gene Therapy Manufacturing Capabilities in Canada–a focused half-day event dedicated to advancing gene and cell therapy development in Canada through regulatory alignment and manufacturing readiness. \nThis virtual symposium will convene international regulatory authorities\, Canadian manufacturing experts\, and rare disease developers to explore two critical enablers of translational success: clinical trial readiness and cGMP manufacturing capacity.
URL:https://canadianrdn.ca/event/canadian-rare-disease-symposium-preparing-for-clinical-trials-international-regulatory-insights-and-cgmp-gene-therapy-manufacturing-capabilities-in-canada/
CATEGORIES:Caregiver,Clinical Trials,Industry,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/09/1757349450505.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20251010T070000
DTEND;TZID=America/Edmonton:20251010T080000
DTSTAMP:20260404T063901
CREATED:20251006T202336Z
LAST-MODIFIED:20251006T202336Z
UID:8952-1760079600-1760083200@canadianrdn.ca
SUMMARY:Rare Diseases International-Community Conversations on Mental Health
DESCRIPTION:
URL:https://canadianrdn.ca/event/rare-diseases-international-community-conversations-on-mental-health/
CATEGORIES:Caregiver,International,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/10/1759479484624.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20251015T100000
DTEND;TZID=America/Edmonton:20251015T113000
DTSTAMP:20260404T063901
CREATED:20251006T201940Z
LAST-MODIFIED:20251006T201940Z
UID:8949-1760522400-1760527800@canadianrdn.ca
SUMMARY:A Conversation About Patient Partner Outsider Syndrome
DESCRIPTION:Patient/caregiver partnership in health research has evolved substantially since the launch of Canada’s Strategy for Patient-Oriented Research (SPOR) over a decade ago. However\, findings from the Patient Advisors Network (PAN) “Reimagining the Research Landscape” report\, commissioned by CIHR in 2024 for the SPOR Refresh\, revealed that patient/caregiver partners often feel like outsiders in the research ecosystem. This webinar will take a deeper dive into the OSSU Research Day presentation “Why do patient/caregiver partners feel like outsiders?” \nMs. Maureen Smith will moderate a frank discussion between two of the report authors\, Mses. Alies Maybee and Annette McKinnon\, and PAN Board member Ms. Sandra Holdsworth\, and leading patient-oriented researchers Drs. Manoj Lalu\, Ambreen Sayani and Stuart Nicholls\, on the barriers uncovered by the report and showcasing best practices to mitigate these barriers.
URL:https://canadianrdn.ca/event/a-conversation-about-patient-partner-outsider-syndrome/
CATEGORIES:Caregiver,National,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/10/1758888477388.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20251016T123000
DTEND;TZID=America/Toronto:20251016T133000
DTSTAMP:20260404T063901
CREATED:20251015T212343Z
LAST-MODIFIED:20251015T212343Z
UID:9023-1760617800-1760621400@canadianrdn.ca
SUMMARY:Aging Out: Transition of care for children with rare neurodevelopmental disorders
DESCRIPTION:Approximately one in 12 Canadians are affected by a rare disorder and two thirds of them are children\, according to the Canadian Organization for Rare Disorders (CORD). Due to the low number of individual cases\, qualified specialists are hard to find. After years of assembling a trusted pediatric care team\, parents are often faced with the challenge of finding a new adult care team once their child turns 18. The challenge is even more complex for rare neurodevelopmental disorders requiring multi-disciplinary care. \nWhat strategies would ease the pediatric to adult care transition? This webcast will bring health care providers\, medical experts and patient advocates together to share ideas and solutions to bridge the gap between pediatric to adult care for those living with neurodevelopmental disorders.
URL:https://canadianrdn.ca/event/aging-out-transition-of-care-for-children-with-rare-neurodevelopmental-disorders/
CATEGORIES:National,Patient Focused,Research Focused,Virtual,Webinars
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20251016T200000
DTEND;TZID=America/Toronto:20251016T210000
DTSTAMP:20260404T063901
CREATED:20251014T180518Z
LAST-MODIFIED:20251014T180518Z
UID:9017-1760644800-1760648400@canadianrdn.ca
SUMMARY:RareKids-CAN Coffee Chat: Digital Storytelling with Krystle Schofield
DESCRIPTION:Join other parents\, caregivers\, and individuals impacted by rare diagnosis and rare disease on October 16 at 8 P.M. EST. and learn about digital storytelling. Learn from Krystle Schofield\, a RareKids-CAN parent partner\, B.C. mom\, digital storytelling facilitator + photographer.
URL:https://canadianrdn.ca/event/rarekids-can-coffee-chat-digital-storytelling-with-krystle-schofield/
CATEGORIES:Caregiver,National,Patient Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2025/10/1760118853512.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20251020T130000
DTEND;TZID=America/Toronto:20251023T160000
DTSTAMP:20260404T063901
CREATED:20250916T185259Z
LAST-MODIFIED:20250916T185259Z
UID:8903-1760965200-1761235200@canadianrdn.ca
SUMMARY:KTDRR’s 2025 Virtual Knowledge Translation Conference
DESCRIPTION:This conference will look at different ways to make knowledge translation (KT) more effective and impactful. They seek presentations that will discuss how to measure the success of KT efforts\, including involving users early on\, working with people with disabilities\, and customizing products and outreach to meet user needs. They’ll also look for presentations that talk about sharing KT content online\, ensuring it’s credible\, teaching digital literacy\, spotting false information\, and making sure disability is represented accurately. In addition\, they encourage presentations that explore how technology can boost KT projects\, such as using digital tools to build online communities\, check text readability\, and summarize research. They also welcome presentations that highlight the role of artificial intelligence (AI) in creating easy-to-understand summaries\, organizing research\, addressing AI bias\, and writing effective prompts. Join them to discover new strategies and tools to enhance your KT efforts.
URL:https://canadianrdn.ca/event/ktdrrs-2025-virtual-knowledge-translation-conference/
CATEGORIES:Patient Focused,Research Focused,Virtual,Webinars
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END:VEVENT
END:VCALENDAR