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BEGIN:DAYLIGHT
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DTSTART:20230326T010000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20240910T080000
DTEND;TZID=UTC:20240912T170000
DTSTAMP:20260404T164140
CREATED:20240730T203040Z
LAST-MODIFIED:20240730T203040Z
UID:4894-1725955200-1726160400@canadianrdn.ca
SUMMARY:PxP 2024 Conference (For Patients\, By Patients)
DESCRIPTION:Standing for ‘For Patients\, By Patients’\, PxP 2024 is entirely led by an international team of patient and public partners and is a Patients Included™ event. Our purpose is to share resources\, mentorship and community with patient partners and others involved in health research. Ultimately\, our goal is partnering to make research stronger. \nThis free\, virtual event aims to bring you a wealth of knowledge\, skills and resources on patient engagement in health research. Patient engagement in health research\, also known as patient and public involvement (in the UK) or consumer involvement (in Australia). ‘Patient engagement’ in health research is where patients are research team members. This is different from volunteering to be a research participant where you might help advance research or healthcare\, but a research participant generally does not give input into the research study itself. Whatever language you prefer\, we warmly welcome everyone to attend.
URL:https://canadianrdn.ca/event/pxp-2024-conference-for-patients-by-patients/
CATEGORIES:Caregiver,Conferences,Healthcare,Patient Focused,Research Focused,Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240916T190000
DTEND;TZID=America/New_York:20240916T200000
DTSTAMP:20260404T164140
CREATED:20240604T000542Z
LAST-MODIFIED:20240604T000542Z
UID:4377-1726513200-1726516800@canadianrdn.ca
SUMMARY:CANPKU+ 2024 ANNUAL GENERAL MEETING
DESCRIPTION:Please note only those who are current members will have the availability to vote at the upcoming AGM. Please check your profile to see if your membership is current. \nNot current? Sign up to become a member or renew your membership at www.canpku.org/membership
URL:https://canadianrdn.ca/event/canpku-2024-annual-general-meeting/
CATEGORIES:Hybrid,National,Patient Focused,Policy
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240917
DTEND;VALUE=DATE:20240918
DTSTAMP:20260404T164140
CREATED:20240827T013421Z
LAST-MODIFIED:20240827T013421Z
UID:5413-1726531200-1726617599@canadianrdn.ca
SUMMARY:EMPOWER & INSPIRE 3RD ANNUAL LEIGH SYNDROME SYMPOSIUM
DESCRIPTION:Empower & Inspire: Understanding and Accelerating Research for Leigh Syndrome\nTuesday\, September 17\, 2024 \nBrought to you by: \n​Cure Mito Foundation & integrative Cardiovascular Metabolism and Pathophysiology Laboratory (iCaMP) at Boston University \nFor details please visit curemito.org/conference \n 
URL:https://canadianrdn.ca/event/empower-inspire-3rd-annual-leigh-syndrome-symposium/
CATEGORIES:Conferences,Healthcare,Industry,Patient Focused,Research Focused,Virtual
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/Cure-Mito.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240918T100000
DTEND;TZID=America/Chicago:20240918T110000
DTSTAMP:20260404T164140
CREATED:20240823T210648Z
LAST-MODIFIED:20240823T210648Z
UID:5366-1726653600-1726657200@canadianrdn.ca
SUMMARY:RITA Patient-Centered: Risk of Infection and Immunological Rare Diseases
DESCRIPTION:Join the webinar “Risk of Infection and Immunological Rare Diseases\,” featuring Dr. Laia Alsina\, MD\, PhD\, Chief of the Clinical Immunology and Primary Immunodeficiencies Reference Unit at Hospital Sant Joan de Déu\, Barcelona. This patient-centered webinar\, organised by RITA\, is part of a new series led by Education WG Chair Jordi Anton\, alongside Savino Sciascia and RITA patient groups. Discover insights into the latest research and clinical practices for managing rare immunological conditions.
URL:https://canadianrdn.ca/event/rita-patient-centered-risk-of-infection-and-immunological-rare-diseases/
CATEGORIES:Caregiver,Events,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/logo.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240918T140000
DTEND;TZID=Europe/Helsinki:20240918T153000
DTSTAMP:20260404T164140
CREATED:20240819T214922Z
LAST-MODIFIED:20240819T214922Z
UID:5219-1726668000-1726673400@canadianrdn.ca
SUMMARY:Rare Disease Day 2025 webinar: Enhancing Accessibility in Physical and Digital Spaces
DESCRIPTION:Join on 18 September at 2 pm (CEST\, UTC+2) for our Rare Disease Day Webinar\, “Enhancing Accessibility in Physical and Digital Spaces.” Discover innovative strategies for making environments more inclusive for people with rare diseases\, featuring insights from accessibility experts and patient advocates. Don’t miss this opportunity to engage in meaningful discussions with speakers Adéla Odrihocká (Czechia)\, James Buller (UK)\, and Andre Felix (Belgium) on how we can create a more accessible world together.
URL:https://canadianrdn.ca/event/rare-disease-day-2025-webinar-enhancing-accessibility-in-physical-and-digital-spaces/
CATEGORIES:Events,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20240919T100000
DTEND;TZID=America/Denver:20240919T113000
DTSTAMP:20260404T164140
CREATED:20240830T231126Z
LAST-MODIFIED:20240830T231126Z
UID:5527-1726740000-1726745400@canadianrdn.ca
SUMMARY:IPNA Webinar: Chronic kidney disease care in low resource settings: Can we make it a smooth ride for children?
DESCRIPTION:The webinar will discuss the challenges and barriers to optimal pediatric CKD care in low-resource settings and invite experts to discuss potential solutions to address the inequities in care. The webinar will discuss patient and family perspectives and the need for support.
URL:https://canadianrdn.ca/event/ipna-webinar-chronic-kidney-disease-care-in-low-resource-settings-can-we-make-it-a-smooth-ride-for-children/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240919T120000
DTEND;TZID=America/New_York:20240919T130000
DTSTAMP:20260404T164140
CREATED:20240904T001559Z
LAST-MODIFIED:20240904T001559Z
UID:5571-1726747200-1726750800@canadianrdn.ca
SUMMARY:Webinar - Clinical trials across the lifespan: Considerations for trials with pregnant people and children
DESCRIPTION:Webinar objectives:\n1. Identify reasons why more clinical trials should include children and pregnant people \n2. Describe additional considerations for designing\, operating\, and communicating about clinical trials with pregnant people and children \n3. Discuss opportunities and challenges for considering clinical trials across the life span with IMPaCT and PregTrials
URL:https://canadianrdn.ca/event/webinar-clinical-trials-across-the-lifespan-considerations-for-trials-with-pregnant-people-and-children/
CATEGORIES:Clinical Trials,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240924T190000
DTEND;TZID=America/Chicago:20240924T200000
DTSTAMP:20260404T164140
CREATED:20240819T213400Z
LAST-MODIFIED:20240819T213400Z
UID:5203-1727204400-1727208000@canadianrdn.ca
SUMMARY:'Clinical neurophysiology in dystonia' by Anke Snijders
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/clinical-neurophysiology-in-dystonia-by-anke-snijders/
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=UTC:20240925T080000
DTEND;TZID=UTC:20240928T170000
DTSTAMP:20260404T164140
CREATED:20240819T214651Z
LAST-MODIFIED:20240819T214651Z
UID:5216-1727251200-1727542800@canadianrdn.ca
SUMMARY:Canadian Association of Genetic Counsellors 2024 Annual Education Conference
DESCRIPTION:
URL:https://canadianrdn.ca/event/canadian-association-of-genetic-counsellors-2024-annual-education-conference/
CATEGORIES:Conferences,Healthcare,In Person,Patient Focused,Policy,Provincial,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Karachi:20240925T080000
DTEND;TZID=Asia/Karachi:20240928T203000
DTSTAMP:20260404T164140
CREATED:20240522T223719Z
LAST-MODIFIED:20240531T022742Z
UID:4141-1727251200-1727555400@canadianrdn.ca
SUMMARY:Week in RARE: RARE Advocacy Summit and Health Equity Forum
DESCRIPTION:Global Genes is on the move — Week in RARE is moving to Kansas City\, Missouri in 2024. Week in RARE combines the RARE Health Equity Forum and RARE Advocacy Summit\, in addition to the RARE Champions of Hope awards ceremony and annual membership meetings for Global Advocacy Alliance and RARE Corporate Alliance. This is a unique opportunity to gather and engage rare disease advocates and leaders in the same space for conversation. \nEach year\, Global Genes convenes one of the world’s largest gatherings of rare disease patients\, caregivers\, advocates\, healthcare professionals\, researchers\, partners\, and allies at the RARE Advocacy Summit to work together to build a path to hope. This is an unparalleled opportunity for advocates\, whether new or veteran\, to forge meaningful connections with others in the rare disease community for future collaboration. Sessions provide attendees\, with insights about the latest in rare disease innovations\, best practices for advocating on an individual and organizational level\, and actionable strategies they can take home and implement immediately to improve care and accelerate change. \nThe RARE Health Equity Forum is the first one-of-a-kind event focused on the intersection of rare disease and health equity with an agenda built around creating systemic and organizational change. The conference was developed to better understand the persistent gaps that exist in the rare disease community for underrepresented and/or marginalized patient populations\, including those who are still seeking a diagnosis or are unaffiliated with a disease-specific foundation. \nThis year\, the Summit will be held in Kansas City\, Missouri.
URL:https://canadianrdn.ca/event/week-in-rare-rare-advocacy-summit-and-health-equity-forum/
LOCATION:Kansas City\, Kansas City\, MO\, United States
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240925T150000
DTEND;TZID=America/Chicago:20240925T160000
DTSTAMP:20260404T164140
CREATED:20240819T213654Z
LAST-MODIFIED:20240819T213654Z
UID:5205-1727276400-1727280000@canadianrdn.ca
SUMMARY:Turner syndrome and fertility options
DESCRIPTION:Register now for a presentation by Professor Janielle van der Velden\, paediatric endocrinologist\, Radboudumc\, Amalia Children’s Hospital\, Nijmegen and expert in Turner syndrome. \nEvent chaired by MTG7 chair Hedi Claahsen\, paediatric endocrinologist\, Radboudumc\, Amalia Children’s Hospital\, Nijmegen
URL:https://canadianrdn.ca/event/turner-syndrome-and-fertility-options/
CATEGORIES:Events,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/video-conference-5167472_1280-768x461-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240926T080000
DTEND;TZID=America/New_York:20240928T170000
DTSTAMP:20260404T164140
CREATED:20240801T212559Z
LAST-MODIFIED:20240801T212706Z
UID:4914-1727337600-1727542800@canadianrdn.ca
SUMMARY:2024 Global CMT Research Convention
DESCRIPTION:The CMT Research Foundation unites the voices of patients\, researchers\, pharma companies\, and regulatory agencies to develop treatments for CMT. \nThis event takes place over three days. Thursday and Friday are scientific meetings meant for researchers and scientists working in CMT. Saturday is primarily for patients and their families and caregivers\, providing a chance to interact with the research community that is working so hard on their behalf and to better understand the latest in research progress.
URL:https://canadianrdn.ca/event/2024-global-cmt-research-convention/
LOCATION:Cambridge\, Cambridge\, MA\, United States
CATEGORIES:Conferences,In Person,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240926T090000
DTEND;TZID=America/Chicago:20240926T103000
DTSTAMP:20260404T164140
CREATED:20240812T211852Z
LAST-MODIFIED:20240812T211852Z
UID:5106-1727341200-1727346600@canadianrdn.ca
SUMMARY:Autoimmune Encephalitis and Immune-mediated Epilepsies
DESCRIPTION:
URL:https://canadianrdn.ca/event/autoimmune-encephalitis-and-immune-mediated-epilepsies/
CATEGORIES:Healthcare,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/Epicare-1.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240929T100000
DTEND;TZID=America/New_York:20240929T150000
DTSTAMP:20260404T164140
CREATED:20240716T204443Z
LAST-MODIFIED:20240823T210828Z
UID:4816-1727604000-1727622000@canadianrdn.ca
SUMMARY:4th Regional Meeting on ITP - PDSA Canada
DESCRIPTION:On September 29\, 2024\, the 4th annual Canadian Regional Meeting will take place in Burlington\, ON\, for patients and families affected by ITP. The event will be held at the Courtyard Marriot. This meeting is a chance to meet other Canadian ITP patients and learn from Canadian ITP experts. If you are interested in registering for the event\, be on the lookout for updates on pdsa.org/Canada or reach out to Jennifer DiRaimo at jdiraimo@pdsa.org. \n  \n 
URL:https://canadianrdn.ca/event/4th-regional-meeting-on-itp-pdsa-canada/
LOCATION:The Courtyard Marriott Burlington\, Burlington\, Ontario\, Canada
CATEGORIES:Events,In Person,National,Patient Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/07/PDSA.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241008T080000
DTEND;TZID=America/Chicago:20241008T170000
DTSTAMP:20260404T164140
CREATED:20240917T220608Z
LAST-MODIFIED:20240917T220608Z
UID:5826-1728374400-1728406800@canadianrdn.ca
SUMMARY:PxP Webinar 3 2024: Different opportunities to engage as a patient partner
DESCRIPTION:The webinar series is all about patient engagement in health research\, also known as patient and public involvement (UK) or consumer involvement (Australia). It is worth mentioning that ‘patient engagement’ in health research is distinctly different from signing up to be a research participant. Taking part in a study as a participant (for example trying a new treatment or management program) can be a great way to help advance healthcare\, but the role would not generally include giving input into the research study itself.
URL:https://canadianrdn.ca/event/pxp-webinar-3-2024-different-opportunities-to-engage-as-a-patient-partner/
CATEGORIES:Caregiver,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20241008T080000
DTEND;TZID=Europe/Helsinki:20241011T170000
DTSTAMP:20260404T164140
CREATED:20241002T203156Z
LAST-MODIFIED:20241002T203156Z
UID:5961-1728374400-1728666000@canadianrdn.ca
SUMMARY:🔵26èmes Journées Françaises de l’Epilepsie
DESCRIPTION:
URL:https://canadianrdn.ca/event/%f0%9f%94%b526emes-journees-francaises-de-lepilepsie/
CATEGORIES:Conferences,In Person,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241008T120000
DTEND;TZID=America/Chicago:20241008T130000
DTSTAMP:20260404T164140
CREATED:20241001T220753Z
LAST-MODIFIED:20241001T220753Z
UID:5948-1728388800-1728392400@canadianrdn.ca
SUMMARY:Understanding the importance of the social determinants of health for children and youth with disabilities
DESCRIPTION:
URL:https://canadianrdn.ca/event/understanding-the-importance-of-the-social-determinants-of-health-for-children-and-youth-with-disabilities/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241016T150000
DTEND;TZID=America/Chicago:20241016T160000
DTSTAMP:20260404T164140
CREATED:20241001T220430Z
LAST-MODIFIED:20241001T220430Z
UID:5945-1729090800-1729094400@canadianrdn.ca
SUMMARY:Supporting the Mental Health Needs of Rare Disease Patients\, Families\, and Communities
DESCRIPTION:During this session\, Dr. Al Freedman will provide tools and resources for supporting the mental health needs of rare disease patients\, families and communities.
URL:https://canadianrdn.ca/event/supporting-the-mental-health-needs-of-rare-disease-patients-families-and-communities/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20241017T080000
DTEND;TZID=Europe/Helsinki:20241018T170000
DTSTAMP:20260404T164140
CREATED:20241002T203337Z
LAST-MODIFIED:20241002T203337Z
UID:5964-1729152000-1729270800@canadianrdn.ca
SUMMARY:EPNS Research Meeting 2024
DESCRIPTION:The EPNS has been organising Research Meetings since 2008. With an aim to enhance research in Paediatric Neurology\, the meeting brings together leaders in the field\, active researchers and young fellows who are interested to join or to set up research projects. It is a forum for researchers in Paediatric Neurology\, where they present their work\, ideas\, results\, creating the possibility for good interaction between researchers and premises for networking\, future collaborative research in Europe and beyond. Experienced professionals and young researchers get together\, in an environment where interactive\, vivid discussions can take place around the presented topics.
URL:https://canadianrdn.ca/event/epns-research-meeting-2024/
CATEGORIES:Conferences,In Person,International,Patient Focused,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/10/Slide1-3-1024x576-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20241017T080000
DTEND;TZID=Europe/Helsinki:20241019T170000
DTSTAMP:20260404T164140
CREATED:20241002T203519Z
LAST-MODIFIED:20241002T203519Z
UID:5967-1729152000-1729357200@canadianrdn.ca
SUMMARY:DIFFERENT FACES OF RARE AND COMPLEX EPILEPSIES
DESCRIPTION:
URL:https://canadianrdn.ca/event/different-faces-of-rare-and-complex-epilepsies/
CATEGORIES:Conferences,In Person,International,Patient Focused,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/10/hero.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20241019T080000
DTEND;TZID=America/Halifax:20241019T170000
DTSTAMP:20260404T164140
CREATED:20240923T212950Z
LAST-MODIFIED:20240923T212950Z
UID:5915-1729324800-1729357200@canadianrdn.ca
SUMMARY:RQMO Educational Day 2024
DESCRIPTION:The 2024 RQMO educational day will focus on a theme that affects many families who have a child with a rare disease: \nThe transition to adulthood of children with differences.
URL:https://canadianrdn.ca/event/rqmo-educational-day-2024/
CATEGORIES:In Person,Patient Focused,Provincial,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/St_Johns:20241020T080000
DTEND;TZID=America/St_Johns:20241022T210000
DTSTAMP:20260404T164140
CREATED:20240730T202537Z
LAST-MODIFIED:20240730T202537Z
UID:4890-1729411200-1729630800@canadianrdn.ca
SUMMARY:#ChildHealthCan2024
DESCRIPTION:Children’s Healthcare Canada and co-hosts\, the Janeway Children’s Hospital Foundation and NL Health Services\, invite you to join us in picturesque Newfoundland and Labrador from October 20-22\, at the St. John’s Convention Centre for their 2024 Annual Conference\, Right-Sizing Health Systems for Kids: Navigating to Brighter Futures. For those unable to attend in person\, a real-time virtual option will also be available. \nChildren’s Healthcare Canada is on a mission to Right-Size Child Healthcare Systems. In 2024\, they will explore how to pave the way for brighter futures for children\, youth\, and families within the healthcare systems. Through the collective efforts of their members\, strategic partners\, and sponsors\, they are dedicated to ensuring that all children and youth in Canada have access to the healthcare services they require in a timely manner. \nWe are thrilled to share that we will be hosting another conference in the Spring of 2025\, giving attendees the opportunity to engage in two conferences within a six-month period! \nJoin us at our upcoming conferences in October 2024 and 2025 as they delve into the concept of right-sizing health systems. Together\, they will discuss what it takes to establish a flexible and responsive system that meets the unique needs of children and youth\, ultimately leading to improved outcomes for all. \nDon’t miss the opportunity to contribute to the conversation on shaping a better future for the health and well-being of our youngest generation. They eagerly anticipate welcoming you to St. John’s\, Newfoundland and Labrador\, as we work towards a brighter tomorrow for our children and families.
URL:https://canadianrdn.ca/event/childhealthcan2024/
LOCATION:St.Johns\, Newfoundland\, 50 New Gower Street\, St.Johns\, Newfoundland\, A1C 1J3\, Canada
CATEGORIES:Caregiver,Conferences,Hybrid,In Person,Patient Focused,Provincial,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/07/1707853515557.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20241022T100000
DTEND;TZID=Europe/Helsinki:20241025T180000
DTSTAMP:20260404T164140
CREATED:20240523T000415Z
LAST-MODIFIED:20240531T022124Z
UID:4150-1729591200-1729879200@canadianrdn.ca
SUMMARY:World Orphan Drug Congress 2024
DESCRIPTION:The World Orphan Drug Congress is the largest\, most established European meeting dedicated to orphan drugs. This year the conference will take place in Barcelona\, Spain. \nFrom cell & gene therapy\, genetic testing\, market access to real world evidence\, this one meeting covers the whole orphan drugs value chain where science\, government and manufacturers all come together to create groundbreaking progress.
URL:https://canadianrdn.ca/event/world-orphan-drug-congress-2024/
LOCATION:Fira de Barcelona Montjuic\, Barcelona\, Spain
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/webp:https://canadianrdn.ca/wp-content/uploads/2024/05/World-Orphan-Drug-Congress-Europe-2024-Logo.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241022T190000
DTEND;TZID=America/Chicago:20241022T200000
DTSTAMP:20260404T164140
CREATED:20240819T213841Z
LAST-MODIFIED:20240819T213841Z
UID:5208-1729623600-1729627200@canadianrdn.ca
SUMMARY:'Neurogeriatric and neurological aspects in palliative care of MSA\, PSP and advanced PD' by Martin Klietz
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/neurogeriatric-and-neurological-aspects-in-palliative-care-of-msa-psp-and-advanced-pd-by-martin-klietz/
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=Europe/Paris:20241023T140000
DTEND;TZID=Europe/Paris:20241023T153000
DTSTAMP:20260404T164140
CREATED:20240819T214318Z
LAST-MODIFIED:20240819T214318Z
UID:5213-1729692000-1729697400@canadianrdn.ca
SUMMARY:EURORDIS Mental Health & Wellbeing Open Webinar
DESCRIPTION:
URL:https://canadianrdn.ca/event/eurordis-mental-health-wellbeing-open-webinar/
CATEGORIES:Caregiver,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241024T080000
DTEND;TZID=UTC:20241025T170000
DTSTAMP:20260404T164140
CREATED:20240809T212727Z
LAST-MODIFIED:20241004T014606Z
UID:5097-1729756800-1729875600@canadianrdn.ca
SUMMARY:The 4th Annual Canadian Children\, Youth and Communities (CCYC) Health In | Equity Conference
DESCRIPTION:The Canadian Children\, Youth and Communities (CCYC) In | Equity Conference is an interdisciplinary conference designed to bring together pediatric health and allied health care professionals to address health care inequities from birth to adolescence using a family-centred approach. \nThis conference explores health equity topics specific to marginalized communities in the Canadian health care system and offers approaches that can be implemented to address barriers in accessing healthcare for under serviced\, high-risk and economically disadvantaged children and youth.
URL:https://canadianrdn.ca/event/the-4th-annual-canadian-children-youth-and-communities-ccyc-health-in-equity-conference/
CATEGORIES:Caregiver,Conferences,National,Patient Focused,Research Focused,Virtual
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/Youth-Conference.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241024T130000
DTEND;TZID=America/Chicago:20241024T140000
DTSTAMP:20260404T164140
CREATED:20241004T221032Z
LAST-MODIFIED:20241004T221032Z
UID:6029-1729774800-1729778400@canadianrdn.ca
SUMMARY:Epilepsy Treatments in Rett Syndrome
DESCRIPTION:The International Rett Syndrome Foundation (IRSF) invites you to this live RettEd session with a goal of educating families on an approach to the treatment of epilepsy in Rett syndrome
URL:https://canadianrdn.ca/event/epilepsy-treatments-in-rett-syndrome/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241026T090000
DTEND;TZID=America/Chicago:20241026T100000
DTSTAMP:20260404T164140
CREATED:20240924T223454Z
LAST-MODIFIED:20240924T223454Z
UID:5924-1729933200-1729936800@canadianrdn.ca
SUMMARY:L4L Session: Sickle Cell Disease and Complications including Stroke
DESCRIPTION:The SCAGO is excited to announce the October Learning for Life session “Sickle Cell Disease and Complications including Stroke” slated for Sat. October 26th! Attendees will leave the session with a rich knowledge of how to prevent complications of Sickle Cell Disease and improve their health outcomes.
URL:https://canadianrdn.ca/event/l4l-session-sickle-cell-disease-and-complications-including-stroke/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241031
DTEND;VALUE=DATE:20241101
DTSTAMP:20260404T164140
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:20260404T164140
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
END:VCALENDAR