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X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241102T080000
DTEND;TZID=America/Chicago:20241102T170000
DTSTAMP:20260404T031128
CREATED:20241004T220842Z
LAST-MODIFIED:20241004T220842Z
UID:6025-1730534400-1730566800@canadianrdn.ca
SUMMARY:Virtual Event: Understanding EDS/HSD+ Symptomology\, Diagnoses and Treatment - A Guide for Primary Care Practitioners & Physician Specialists
DESCRIPTION:This Conference is for primary care practitioners and physician specialists who encounter patients with complex health issues and chronic pain in their clinical practice\, which may or may not be related to Ehlers-Danlos Syndromes or hypermobility Spectrum Disorders (EDS/HSD+).
URL:https://canadianrdn.ca/event/virtual-event-understanding-eds-hsd-symptomology-diagnoses-and-treatment-a-guide-for-primary-care-practitioners-physician-specialists/
CATEGORIES:Conferences,Healthcare,Patient Focused,Research Focused,Virtual
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/10/EDS-scaled.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241102T090000
DTEND;TZID=America/Chicago:20241102T180000
DTSTAMP:20260404T031128
CREATED:20241017T224822Z
LAST-MODIFIED:20241017T224822Z
UID:6102-1730538000-1730570400@canadianrdn.ca
SUMMARY:EDS ECHO Summit: Diet and Nutrition
DESCRIPTION:The Ehlers-Danlos Society is delighted to welcome you to register for the EDS ECHO Summit: Diet and Nutrition\, a virtual event held on November 2\, 2024. This event is suitable for community members\, their friends\, families\, and caregivers\, as well as healthcare professionals.  
URL:https://canadianrdn.ca/event/eds-echo-summit-diet-and-nutrition/
CATEGORIES:Conferences,Healthcare,Patient Focused,Research Focused,Virtual
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/10/Web_banner-2048x634-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241105
DTEND;VALUE=DATE:20241106
DTSTAMP:20260404T031128
CREATED:20240730T020251Z
LAST-MODIFIED:20240730T020251Z
UID:4886-1730764800-1730851199@canadianrdn.ca
SUMMARY:2024 Annual Pain Centre Conference - Building Bridges to Reduce Disparities in Pediatric Pain
DESCRIPTION:
URL:https://canadianrdn.ca/event/2024-annual-pain-centre-conference-building-bridges-to-reduce-disparities-in-pediatric-pain/
LOCATION:toronto\, ontario\, 686 Bay Street\, Toronto\, Ontario\, M5G 0A4\, Canada
CATEGORIES:Healthcare,In Person,National,Patient Focused,Provincial,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241105T170000
DTEND;TZID=UTC:20241105T180000
DTSTAMP:20260404T031128
CREATED:20241031T202009Z
LAST-MODIFIED:20241031T202009Z
UID:6858-1730826000-1730829600@canadianrdn.ca
SUMMARY:FSHD Clinical Updates
DESCRIPTION:Muscular Dystrophy Canada (MDC) and the Neuromuscular Disease Network for Canada (NMD4C) are pleased to invite you to a webinar on FSHD clinical updates. This webinar is for Canadian clinicians\, academics\, researchers\, and trainees with an interest in neuromuscular disease. NMD4C and MDC are providing organizational and technical support. This is an independent clinical/academic webinar with no industry sponsorship or influence. AGENDA: Chair and Speaker: Dr. Lawrence Korngut Speakers: Dr. Patrick Horn: Results of a phase 3 study of losmapimod in the treatment of FSHD Dr. Eva Chin: Catalysing Innovation in FSHD Therapeutics Objectives: – Innovative new therapies on the horizon for FSHD – The role of patient foundations and patient-funded R&D for accelerating novel therapies – Understand the outcome to the REACH study of losmapimod in FSHD The NMD Rounds & Educational Webinars is a self-approved group learning activity (Section 1) as defined by the Maintenance of Certification Program of the Royal College of Physicians and Surgeons of Canada. If you have any questions\, please email <research@muscle.ca> If you would like to learn more about NMD4C and to become a member: https://neuromuscularnetwork.ca/become-a-member/
URL:https://canadianrdn.ca/event/fshd-clinical-updates/
CATEGORIES:Clinical Trials,Healthcare,National,Patient Focused,Research Focused,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241105T190000
DTEND;TZID=America/Chicago:20241105T200000
DTSTAMP:20260404T031128
CREATED:20240819T213202Z
LAST-MODIFIED:20240819T213202Z
UID:5200-1730833200-1730836800@canadianrdn.ca
SUMMARY:Diagnostic approach to childhood-onset chorea' by Juan Darío Ortigoza-Escobar
DESCRIPTION:Educational webinars on rare neurological\, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).
URL:https://canadianrdn.ca/event/diagnostic-approach-to-childhood-onset-chorea-by-juan-dario-ortigoza-escobar/
CATEGORIES:Healthcare,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/08/8f22890e-e95f-4472-bce2-c61975661dd0.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20241106T080000
DTEND;TZID=America/Halifax:20241107T170000
DTSTAMP:20260404T031128
CREATED:20240522T235647Z
LAST-MODIFIED:20240531T021705Z
UID:4147-1730880000-1730998800@canadianrdn.ca
SUMMARY:Clinical Trials Ontario Conference
DESCRIPTION:The CTO Clinical Trials Conference is a leading Canadian forum to drive innovation in clinical trials\, including leaders from the pharmaceutical and medical device industries\, academic and healthcare leaders\, representatives from patient groups\, health charities and research institutions. This annual event provides a unique opportunity for members of our multi-stakeholder sector to collaborate\, exchange knowledge and advance clinical trials.
URL:https://canadianrdn.ca/event/clinical-trials-ontario-conference/
LOCATION:Hilton\, Toronto\, Toronto\, Ontario\, Canada
CATEGORIES:Clinical Trials,Conferences,Healthcare,Hybrid,Industry,National,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/05/ClinicalTrials-logo-2024-05.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241106T123000
DTEND;TZID=America/Chicago:20241106T133000
DTSTAMP:20260404T031128
CREATED:20241031T212323Z
LAST-MODIFIED:20241031T212323Z
UID:6877-1730896200-1730899800@canadianrdn.ca
SUMMARY:CF Canada Community Townhall
DESCRIPTION:Register today! Join the Community Townhall Meeting on Wednesday\, November 6\, 12:30PM EST/ 9:30 AM PST. You will hear from CF Canada’s President and CEO Kelly Grover on the latest updates in CF research and care\, be inspired by stories of how Canadians CF community members are shaping a future without limits and learn how you can help.
URL:https://canadianrdn.ca/event/cf-canada-community-townhall/
CATEGORIES:Events,Healthcare,Patient Focused,Research Focused,Virtual
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/10/CFcan_bil_rgb_TM.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241108T080000
DTEND;TZID=UTC:20241109T170000
DTSTAMP:20260404T031128
CREATED:20241017T212626Z
LAST-MODIFIED:20241017T212626Z
UID:6093-1731052800-1731171600@canadianrdn.ca
SUMMARY:Global Congress of the GANSID: November 8-9\, 2024
DESCRIPTION:GANSID Congress 2024 is the 2nd Congress of the Global Action Network for Sickle Cell & Other Inherited Blood Disorders (GANSID) taking place virtually to ensure all clinicians\, people with hereditary blood disorders\, and global advocates can participate from any part of the world.
URL:https://canadianrdn.ca/event/global-congress-of-the-gansid-november-8-9-2024/
CATEGORIES:Conferences,Healthcare,International,Research Focused,Virtual
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/10/462814113_1091299899663904_8574680770729088772_n.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241112T080000
DTEND;TZID=UTC:20241115T170000
DTSTAMP:20260404T031128
CREATED:20241112T224717Z
LAST-MODIFIED:20241112T224717Z
UID:6976-1731398400-1731690000@canadianrdn.ca
SUMMARY:2024 International Congress for Ataxia Research
DESCRIPTION:Today marks the opening of the largest-ever scientific conference on ataxia research — the International Congress for Ataxia Research (ICAR) is welcoming a record-setting 600 attendees. The London-based conference runs through to November 15 and will be a comprehensive scientific review of new research into the ataxias\, covering topics from advances in genetics and disease mechanisms to therapeutics approaches\, as well as a debate on emerging ataxia research topics. ICAR represents a strong collaboration between global advocacy organizations focused on advancing research for ataxia\, including co-hosts Ataxia UK\, Friedreich’s Ataxia Research Alliance (FARA)\, National Ataxia Foundation (NAF)\, and Ataxia Global Initiative (AGI).
URL:https://canadianrdn.ca/event/2024-international-congress-for-ataxia-research/
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241113T180000
DTEND;TZID=America/Chicago:20241113T190000
DTSTAMP:20260404T031128
CREATED:20241017T224617Z
LAST-MODIFIED:20241017T224617Z
UID:6099-1731520800-1731524400@canadianrdn.ca
SUMMARY:Rare Disease Day 2025 webinar: Healthcare professionals
DESCRIPTION:
URL:https://canadianrdn.ca/event/rare-disease-day-2025-webinar-healthcare-professionals/
CATEGORIES:Healthcare,International,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/10/Healthcare-professionals-.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20241114T160000
DTEND;TZID=Europe/Paris:20241114T170000
DTSTAMP:20260404T031128
CREATED:20241031T213203Z
LAST-MODIFIED:20241031T213203Z
UID:6883-1731600000-1731603600@canadianrdn.ca
SUMMARY:'DBS in Dystonia - the network perspective' by Juho Joutsa
DESCRIPTION:Educational webinars on rare neurological\, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).
URL:https://canadianrdn.ca/event/dbs-in-dystonia-the-network-perspective-by-juho-joutsa/
CATEGORIES:Healthcare,International,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/10/ERN-RND-header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241118
DTEND;VALUE=DATE:20241119
DTSTAMP:20260404T031128
CREATED:20240618T030756Z
LAST-MODIFIED:20240618T030756Z
UID:4471-1731888000-1731974399@canadianrdn.ca
SUMMARY:4th Annual Symposium for Researchers and Clinicians on Wiskott Aldrich Syndrome
DESCRIPTION:The fourth international symposium for researchers and clinicians on Wiskott Aldrich Syndrome is being held in Milan\, Italy and offers access to the latest research and analysis related to this rare disease. \nMeeting participants will gain valuable insights into innovative perspectives in both basic and clinical research. The scientific programme will draw together experts from around the world to discuss breakthroughs in basic research\, advances in clinical practice\, novel therapeutic approaches and new insights into stem-cell and cellular therapies. An ideal forum to share knowledge\, connect with professional colleagues and grow your professional network.
URL:https://canadianrdn.ca/event/4th-annual-symposium-for-researchers-and-clinicians-on-wiskott-aldrich-syndrome/
LOCATION:San Raffaele Institute\, Milan\, Italy
CATEGORIES:Conferences,Events,Healthcare,In Person,International,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20241120T170000
DTEND;TZID=Europe/Paris:20241120T180000
DTSTAMP:20260404T031128
CREATED:20241119T234913Z
LAST-MODIFIED:20241119T234913Z
UID:7016-1732122000-1732125600@canadianrdn.ca
SUMMARY:Webinar on ''mental health and behavioral difficulties in children with rare neonatal surgical disease''
DESCRIPTION:You are invited to join an insightful webinar hosted by ERNICA\, eUROGEN\, and EURORDIS on Mental health and behavioral difficulties in children with rare neonatal surgical disease: assessment\, outcomes and implications for research\, policy and practice’. \nThis interactive session will raise awareness of the mental health and behavioral challenges faced by children with rare neonatal surgical conditions\,
URL:https://canadianrdn.ca/event/webinar-on-mental-health-and-behavioral-difficulties-in-children-with-rare-neonatal-surgical-disease/
CATEGORIES:Healthcare,International,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241121T190000
DTEND;TZID=America/Chicago:20241121T200000
DTSTAMP:20260404T031128
CREATED:20241118T224118Z
LAST-MODIFIED:20241118T224118Z
UID:7004-1732215600-1732219200@canadianrdn.ca
SUMMARY:National Advocacy Update
DESCRIPTION:Join Cystic Fibrosis Canada’s National Advocacy Update on Thursday\, November 21\, from 7-8 PM ET. This virtual event is open to volunteer advocates\, and anyone wanting to advocate for individuals living with cystic fibrosis.
URL:https://canadianrdn.ca/event/national-advocacy-update/
CATEGORIES:Events,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20241124T080000
DTEND;TZID=America/Halifax:20241125T170000
DTSTAMP:20260404T031128
CREATED:20241007T215427Z
LAST-MODIFIED:20241007T215427Z
UID:6046-1732435200-1732554000@canadianrdn.ca
SUMMARY:Genetic Rare Immune Disorders Symposium (GRIDS)
DESCRIPTION:GRIDS brings together world renowned experts from across the globe to discuss recent developments and unique challenges in the field of lysosomal storage disorders and/or rare genetic diseases.
URL:https://canadianrdn.ca/event/genetic-rare-immune-disorders-symposium-grids/
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/10/GRIDS-LOGO_800pxW.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20241126T080000
DTEND;TZID=America/Halifax:20241127T170000
DTSTAMP:20260404T031128
CREATED:20240917T220323Z
LAST-MODIFIED:20240917T220323Z
UID:5823-1732608000-1732726800@canadianrdn.ca
SUMMARY:Fall 2024 Rare Disease Conference
DESCRIPTION:
URL:https://canadianrdn.ca/event/fall-2024-rare-disease-conference/
CATEGORIES:Caregiver,Conferences,Healthcare,Hybrid,Industry,National,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20241127T180000
DTEND;TZID=Europe/Paris:20241127T190000
DTSTAMP:20260404T031128
CREATED:20241126T225916Z
LAST-MODIFIED:20241126T225916Z
UID:7051-1732730400-1732734000@canadianrdn.ca
SUMMARY:Outcomes and challenges in Spina Bifida: bridging adolescence and adulthood
DESCRIPTION:This webinar explores the challenges individuals with spina bifida face from adolescence to adulthood\, focusing on patient-reported outcomes (PROMs) and urological management. Neurogenic bladder\, a prevalent complication in SB\, often leads to incontinence\, hydronephrosis\, and urinary tract infections\, which may significantly affect quality of life (QoL). Advances in medical and surgical management have reduced the risk of renal failure\, yet continence remains a persistent issue. Drawing on literature on PROMs and urological outcomes\, we examine general health and bladder-specific outcomes\, including tools to examine these. Factors influencing QoL include clean intermittent catheterization\, transition readiness\, mental health\, and social support. Despite multimodal interventions\, incontinence continues to impact daily life. The session highlights the importance of PROMs and multidisciplinary approaches to optimize care and improve long-term outcomes for SB patients.
URL:https://canadianrdn.ca/event/outcomes-and-challenges-in-spina-bifida-bridging-adolescence-and-adulthood/
CATEGORIES:Healthcare,Industry,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
END:VCALENDAR