BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Canadian Rare Disease Network - ECPv6.15.18//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-WR-CALNAME:Canadian Rare Disease Network X-ORIGINAL-URL:https://canadianrdn.ca X-WR-CALDESC:Events for Canadian Rare Disease Network REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:UTC BEGIN:STANDARD TZOFFSETFROM:+0000 TZOFFSETTO:+0000 TZNAME:UTC DTSTART:20230101T000000 END:STANDARD END:VTIMEZONE BEGIN:VTIMEZONE TZID:America/Denver BEGIN:DAYLIGHT TZOFFSETFROM:-0700 TZOFFSETTO:-0600 TZNAME:MDT DTSTART:20230312T090000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0600 TZOFFSETTO:-0700 TZNAME:MST DTSTART:20231105T080000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0700 TZOFFSETTO:-0600 TZNAME:MDT DTSTART:20240310T090000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0600 TZOFFSETTO:-0700 TZNAME:MST DTSTART:20241103T080000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0700 TZOFFSETTO:-0600 TZNAME:MDT DTSTART:20250309T090000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0600 TZOFFSETTO:-0700 TZNAME:MST DTSTART:20251102T080000 END:STANDARD END:VTIMEZONE BEGIN:VTIMEZONE TZID:America/Chicago BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20230312T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20231105T070000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20240310T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20241103T070000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20250309T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20251102T070000 END:STANDARD END:VTIMEZONE BEGIN:VTIMEZONE TZID:Asia/Dubai BEGIN:STANDARD TZOFFSETFROM:+0400 TZOFFSETTO:+0400 TZNAME:+04 DTSTART:20230101T000000 END:STANDARD END:VTIMEZONE BEGIN:VTIMEZONE TZID:UTC BEGIN:STANDARD TZOFFSETFROM:+0000 TZOFFSETTO:+0000 TZNAME:UTC DTSTART:20230101T000000 END:STANDARD END:VTIMEZONE BEGIN:VTIMEZONE TZID:America/New_York BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20230312T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20231105T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20240310T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20241103T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20250309T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20251102T060000 END:STANDARD END:VTIMEZONE BEGIN:VTIMEZONE TZID:America/Halifax BEGIN:DAYLIGHT TZOFFSETFROM:-0400 TZOFFSETTO:-0300 TZNAME:ADT DTSTART:20230312T060000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0300 TZOFFSETTO:-0400 TZNAME:AST DTSTART:20231105T050000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0400 TZOFFSETTO:-0300 TZNAME:ADT DTSTART:20240310T060000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0300 TZOFFSETTO:-0400 TZNAME:AST DTSTART:20241103T050000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0400 TZOFFSETTO:-0300 TZNAME:ADT DTSTART:20250309T060000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0300 TZOFFSETTO:-0400 TZNAME:AST DTSTART:20251102T050000 END:STANDARD END:VTIMEZONE BEGIN:VTIMEZONE TZID:Europe/Paris BEGIN:DAYLIGHT TZOFFSETFROM:+0100 TZOFFSETTO:+0200 TZNAME:CEST DTSTART:20230326T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0200 TZOFFSETTO:+0100 TZNAME:CET DTSTART:20231029T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0100 TZOFFSETTO:+0200 TZNAME:CEST DTSTART:20240331T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0200 TZOFFSETTO:+0100 TZNAME:CET DTSTART:20241027T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0100 TZOFFSETTO:+0200 TZNAME:CEST DTSTART:20250330T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0200 TZOFFSETTO:+0100 TZNAME:CET DTSTART:20251026T010000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;VALUE=DATE:20241031 DTEND;VALUE=DATE:20241101 DTSTAMP:20260404T165415 CREATED:20240809T211329Z LAST-MODIFIED:20240809T211329Z UID:5094-1730332800-1730419199@canadianrdn.ca SUMMARY:Celebrating 15 Years of TACT: A Milestone Event in Boston DESCRIPTION:This year marks the 15th anniversary of the TREAT-NMD Advisory committee for therapeutics (TACT). TACT was set up in 2009 by Prof. Volker Straub and Kate Bushby to provide the neuromuscular community with a unique drug development resource.  The aim is to give transparent and consistent guidance to the neuromuscular research community in order to advance the treatment of neuromuscular diseases more effectively.  Each year the committee meets in the spring and the autumn\, and a bespoke panel is assembled to review up to four applications for advice from organisations developing treatments in NMD.The symposium is designed for industry professionals involved in developing treatments for rare neuromuscular diseases and offers a unique opportunity to learn from past mistakes\, engage with leading experts\, and gain valuable insights into the challenges and opportunities within the field. Attendees can expect interactive sessions and ample opportunities to pose questions to the speakers\, fostering meaningful dialogue and knowledge exchange. URL:https://canadianrdn.ca/event/celebrating-15-years-of-tact-a-milestone-event-in-boston/ CATEGORIES:Conferences,Healthcare,In Person,Patient Focused,Research Focused ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/NMD-1.jpeg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Denver:20241031T120000 DTEND;TZID=America/Denver:20241031T130000 DTSTAMP:20260404T165415 CREATED:20240828T231253Z LAST-MODIFIED:20240828T231253Z UID:5502-1730376000-1730379600@canadianrdn.ca SUMMARY:CRDN Townhall – An Update on the Co-Development of our Strategic Plan DESCRIPTION:Join the Canadian Rare Disease Network (CRDN) – Réseau Canadien des Maladies Rares – for a dynamic townhall to engage with thought leaders\, experts\, and the rare disease community as we explore and shape the future of rare disease care and research in Canada. This townhall will provide an overview of the CRDN and its draft strategic plan. Following the presentation\, there will be an opportunity to ask questions and contribute to the co-development of CRDN’s strategic plan. Whether you are a patient\, caregiver\, researcher\, healthcare provider\, advocate\, or other member of the rare disease community\, your voice is vital in building a more integrated\, inclusive\, and compassionate approach to rare disease care and research in Canada. Register now to be part of this conversation! URL:https://canadianrdn.ca/event/crdn-townhall-an-update-on-the-co-development-of-our-strategic-plan/ CATEGORIES:Caregiver,Events,National,Patient Focused,Policy,Provincial,Research Focused,Virtual ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/08/Town-Hall-Eng.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20241102T080000 DTEND;TZID=America/Chicago:20241102T170000 DTSTAMP:20260404T165415 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=UTC:20241102T080000 DTEND;TZID=UTC:20241102T180000 DTSTAMP:20260404T165415 CREATED:20241017T225433Z LAST-MODIFIED:20241017T225433Z UID:6108-1730534400-1730570400@canadianrdn.ca SUMMARY:The Association X Fragile Québec Conference DESCRIPTION: URL:https://canadianrdn.ca/event/the-association-x-fragile-quebec-conference/ CATEGORIES:Conferences,In Person,Patient Focused,Provincial,Research Focused ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/10/cropped-logo-axfq_coul_rgb.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20241102T090000 DTEND;TZID=America/Chicago:20241102T180000 DTSTAMP:20260404T165415 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:20260404T165415 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:20260404T165415 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 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:20260404T165415 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/Chicago:20241106T123000 DTEND;TZID=America/Chicago:20241106T133000 DTSTAMP:20260404T165415 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=America/Denver:20241107T080000 DTEND;TZID=America/Denver:20241107T090000 DTSTAMP:20260404T165415 CREATED:20240830T231441Z LAST-MODIFIED:20240830T231441Z UID:5531-1730966400-1730970000@canadianrdn.ca SUMMARY:IPNA Webinar: 2024 ISPD guidelines on peritonitis and exit site infection in children receiving peritoneal dialysis DESCRIPTION: URL:https://canadianrdn.ca/event/ipna-webinar-2024-ispd-guidelines-on-peritonitis-and-exit-site-infection-in-children-receiving-peritoneal-dialysis/ CATEGORIES:Patient Focused,Research Focused,Virtual,Webinars END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20241107T190000 DTEND;TZID=America/New_York:20241107T200000 DTSTAMP:20260404T165415 CREATED:20241106T224244Z LAST-MODIFIED:20241106T224244Z UID:6955-1731006000-1731009600@canadianrdn.ca SUMMARY:Nutrition for your Energy and Health DESCRIPTION: URL:https://canadianrdn.ca/event/nutrition-for-your-energy-and-health/ CATEGORIES:Patient Focused,Research Focused,Virtual,Webinars END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Halifax:20241108T160000 DTEND;TZID=America/Halifax:20241108T170000 DTSTAMP:20260404T165415 CREATED:20241106T224356Z LAST-MODIFIED:20241106T224356Z UID:6958-1731081600-1731085200@canadianrdn.ca SUMMARY:Understanding Your Lab Results DESCRIPTION:Making sense of your lab tests involves more than just knowing why the test is done. It’s also important to understand what the results mean and what can affect the results.  Join the webinar to better understand how your results affect your treatment and help you to manage your MDS\, AA or PNH. URL:https://canadianrdn.ca/event/understanding-your-lab-results/ CATEGORIES:Patient Focused,Research Focused,Virtual,Webinars END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/New_York:20241109T083000 DTEND;TZID=America/New_York:20241109T130000 DTSTAMP:20260404T165415 CREATED:20241107T230742Z LAST-MODIFIED:20241107T230742Z UID:6973-1731141000-1731157200@canadianrdn.ca SUMMARY:Montreal Patient Education Meeting – IN-PERSON DESCRIPTION: URL:https://canadianrdn.ca/event/montreal-patient-education-meeting-in-person/ CATEGORIES:Caregiver,Conferences,Patient Focused,Provincial,Research Focused END:VEVENT BEGIN:VEVENT DTSTART;TZID=UTC:20241112T080000 DTEND;TZID=UTC:20241115T170000 DTSTAMP:20260404T165415 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:20241113T110000 DTEND;TZID=America/Chicago:20241113T120000 DTSTAMP:20260404T165415 CREATED:20241105T222729Z LAST-MODIFIED:20241112T223415Z UID:6940-1731495600-1731499200@canadianrdn.ca SUMMARY:Neuroinclusion at Work: Six Principles for Inclusion DESCRIPTION:In this presentation\, facilitators will walk attendees through Six Principles that promote more supportive and\, ultimately\, successful work environments. In addition to explaining the basic concepts of each principle\, attendees will receive practical\, actionable ideas and strategies to apply the principles in your own workplace. URL:https://canadianrdn.ca/event/neuroinclusion-at-work-six-principles-for-inclusion/ CATEGORIES:Patient Focused,Research Focused,Virtual,Webinars END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20241118T143000 DTEND;TZID=Europe/Paris:20241118T160000 DTSTAMP:20260404T165415 CREATED:20241118T225114Z LAST-MODIFIED:20241118T225114Z UID:7010-1731940200-1731945600@canadianrdn.ca SUMMARY:The impact of rare conditions on self-identity DESCRIPTION:Living with a rare condition can significantly impact a person’s identity\, as they may struggle to separate who they are from their condition. This internal conflict is often intensified during formative years\, affecting self-perception and even sexuality. The stigma and discrimination associated with rare diseases\, especially genetic ones\, add further challenges. Carriers of genetic conditions face their own fears\, such as discrimination\, complicating their sense of self-worth. However\, finding a sense of identity beyond the disease is vital. Connecting with others in similar situations can be transformative\, offering a sense of belonging that helps individuals see themselves beyond their condition. This webinar will explore the impact of rare diseases on identity from various perspectives\, including the experiences of individuals\, families\, and those living with different conditions. URL:https://canadianrdn.ca/event/the-impact-of-rare-conditions-on-self-identity/ CATEGORIES:Patient Focused,Virtual,Webinars END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20241120T130000 DTEND;TZID=America/Chicago:20241120T140000 DTSTAMP:20260404T165415 CREATED:20241107T230330Z LAST-MODIFIED:20241107T230330Z UID:6970-1732107600-1732111200@canadianrdn.ca SUMMARY:ALS Research and Clinical Trials 101 Q&A Drop-In DESCRIPTION:This monthly Q&A drop-in session is available for people living with ALS\, their families\, caregivers\, and anyone close to someone living with the disease who is seeking information or might have questions about ALS research and/or clinical trials. URL:https://canadianrdn.ca/event/als-research-and-clinical-trials-101-qa-drop-in/ CATEGORIES:Patient Focused,Policy,Research Focused,Virtual,Webinars END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/Paris:20241120T170000 DTEND;TZID=Europe/Paris:20241120T180000 DTSTAMP:20260404T165415 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=Europe/Paris:20241121T160000 DTEND;TZID=Europe/Paris:20241121T170000 DTSTAMP:20260404T165415 CREATED:20241031T213608Z LAST-MODIFIED:20241031T213608Z UID:6888-1732204800-1732208400@canadianrdn.ca SUMMARY:Muscle pathology of storage diseases with focus on plyglucosan and lipid storage myopathies DESCRIPTION:Delivered by Prof. Anders Oldfors (University of Gothenburg\, Sweden) on November 21st 2024 at 16:00 Paris Time This is a EURO-NMD webinar in collaboration with ERN-RND (rare neurological disorders) and European Academy of Neurology. READ CAREFULLY please: By registering and attending the webinar you consent to the recording of the webinar and its later diffusion through the EURO-NMD websites using an YouTube Channel. URL:https://canadianrdn.ca/event/muscle-pathology-of-storage-diseases-with-focus-on-plyglucosan-and-lipid-storage-myopathies/ CATEGORIES:International,Patient Focused,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;TZID=America/Chicago:20241121T190000 DTEND;TZID=America/Chicago:20241121T200000 DTSTAMP:20260404T165415 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:20260404T165415 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/Chicago:20241125T100000 DTEND;TZID=America/Chicago:20241125T110000 DTSTAMP:20260404T165415 CREATED:20241105T223052Z LAST-MODIFIED:20241105T223052Z UID:6943-1732528800-1732532400@canadianrdn.ca SUMMARY:The Role of Genetic Counselors in Genomic Mainstreaming DESCRIPTION:The Role of Genetic Counselors in Genomic Mainstreaming is an international panel discussion and interactive Q & A with Demetra Georgiou\, Genomic Transformation Manager at Imperial College Healthcare NHS Trust\, Jill Stopfer\, Associate Director of Genetic Counseling at the Dana Farber Cancer Institute\, and Laura Hercher\, Director of Student Research at Sarah Lawrence College Human Genetics Program\, hosted by Kira Dineen\, DNA Today’s Founder\, Producer\, and Host. URL:https://canadianrdn.ca/event/the-role-of-genetic-counselors-in-genomic-mainstreaming/ CATEGORIES:Patient Focused,Research Focused,Virtual,Webinars END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Halifax:20241126T080000 DTEND;TZID=America/Halifax:20241127T170000 DTSTAMP:20260404T165415 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:20241126T150000 DTEND;TZID=Europe/Paris:20241126T160000 DTSTAMP:20260404T165415 CREATED:20241031T213740Z LAST-MODIFIED:20241031T213740Z UID:6890-1732633200-1732636800@canadianrdn.ca SUMMARY:'Differential diagnosis aside from neuroimaging for non-Leukodystrophy white matter diseases' by Nicole Wolf 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/differential-diagnosis-aside-from-neuroimaging-for-non-leukodystrophy-white-matter-diseases-by-nicole-wolf/ CATEGORIES:International,Patient Focused,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;TZID=Europe/Paris:20241127T180000 DTEND;TZID=Europe/Paris:20241127T190000 DTSTAMP:20260404T165415 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 BEGIN:VEVENT DTSTART;TZID=America/New_York:20241129T140000 DTEND;TZID=America/New_York:20241129T150000 DTSTAMP:20260404T165415 CREATED:20241127T230150Z LAST-MODIFIED:20241127T230150Z UID:7057-1732888800-1732892400@canadianrdn.ca SUMMARY:ENVISAGE - IAACD global listening and sharing session DESCRIPTION:Travel the globe with the International Alliance Academies of Childhood Disability (IAACD) in a 24-hour VIRTUAL listening and sharing session to celebrate the International Day of Persons with Disabilities! This year’s theme is “Families: Who Cares for Them?”. For the first time ever\, Canada is represented in this event! URL:https://canadianrdn.ca/event/envisage-iaacd-global-listening-and-sharing-session/ CATEGORIES:Caregiver,Patient Focused,Virtual,Webinars END:VEVENT BEGIN:VEVENT DTSTART;TZID=UTC:20241202T080000 DTEND;TZID=UTC:20241203T170000 DTSTAMP:20260404T165415 CREATED:20241031T212706Z LAST-MODIFIED:20241031T212706Z UID:6880-1733126400-1733245200@canadianrdn.ca SUMMARY:Organoid Symposium & Workshop DESCRIPTION:Stem Cell Network is excited to partner with the University of Toronto’s Applied Organoid Core in delivering the 2024 Organoid Symposium: Generation and Applications of iPSC-Derived Organoid Models! \nHuman pluripotent stem cell (hPSC)-derived organoid research offers unique opportunities to explore human disease\, advance personalized drug discovery\, and study complex biological processes such as development and disease progression. \nThis two-day Symposium\, offered in a hybrid format\, will highlight cutting-edge research and developments in the field of organoids. The symposium includes national and international speakers with expertise in the development and utilization of organoid models across a range of tissue types. URL:https://canadianrdn.ca/event/organoid-symposium-workshop/ CATEGORIES:Conferences,Healthcare,Hybrid,Patient Focused,Research Focused ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/10/Screenshot-2024-10-16-at-9.27.12 AM-768x226-1.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Denver:20241202T080000 DTEND;TZID=America/Denver:20241203T170000 DTSTAMP:20260404T165415 CREATED:20241121T024400Z LAST-MODIFIED:20241121T024400Z UID:7020-1733126400-1733245200@canadianrdn.ca SUMMARY:Child Health Hub in Transition to Adult Healthcare DESCRIPTION:The Child Health Hub in Transition to Adult Healthcare is excited to be hosting the 2nd Transition to Adulthood Pop-Up event on December 2-3\, 2023\, at the beautiful Hyatt Regency in downtown Vancouver. This event aims to bring together youth\, families\, trainees\, researchers\, clinicians\, and policy/decision makers to celebrate the best of what we are learning\, and doing\, to help young people to develop fully\, even when they are challenged by health conditions. For those unable to join in-person\, aspects of the event will be made available in a virtual format. URL:https://canadianrdn.ca/event/child-health-hub-in-transition-to-adult-healthcare/ CATEGORIES:Caregiver,Healthcare,Hybrid,Industry,Patient Focused,Policy,Provincial,Research Focused END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Denver:20241204T110000 DTEND;TZID=America/Denver:20241204T120000 DTSTAMP:20260404T165415 CREATED:20241130T022325Z LAST-MODIFIED:20241130T022325Z UID:7098-1733310000-1733313600@canadianrdn.ca SUMMARY:Accessing Data through DASH DESCRIPTION:Learn how HDRN Canada’s Data Access Support Hub (DASH) can help health researchers access multi-regional data. URL:https://canadianrdn.ca/event/accessing-data-through-dash/ CATEGORIES:Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars END:VEVENT BEGIN:VEVENT DTSTART;TZID=UTC:20241205T080000 DTEND;TZID=UTC:20241205T170000 DTSTAMP:20260404T165415 CREATED:20241017T225206Z LAST-MODIFIED:20241121T024034Z UID:6105-1733385600-1733418000@canadianrdn.ca SUMMARY:Kabuki Syndrome Foundation: Annual Research Conference DESCRIPTION: URL:https://canadianrdn.ca/event/kabuki-syndrome-foundation-annual-research-conference/ CATEGORIES:Conferences,Healthcare,International,Patient Focused,Research Focused,Virtual END:VEVENT END:VCALENDAR