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BEGIN:DAYLIGHT
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250114T180000
DTEND;TZID=America/New_York:20250114T190000
DTSTAMP:20260410T040437
CREATED:20241228T053546Z
LAST-MODIFIED:20241228T053546Z
UID:7291-1736877600-1736881200@canadianrdn.ca
SUMMARY:CPD-Accredited Webinar | Exploring the clinical trial landscape in Duchenne muscular dystrophy: Challenges\, opportunities and consideration of a possible cholesterol metabolism-related target
DESCRIPTION:NMD4C and MDC are pleased to invite you to a webinar on Exploring the clinical trial landscape in Duchenne muscular dystrophy: Challenges\, opportunities and consideration of a possible cholesterol metabolism-related target. NMD4C and MDC are providing organizational and technical support. This is a an independent clinical/academic webinar with no industry sponsorship or influence.
URL:https://canadianrdn.ca/event/cpd-accredited-webinar-exploring-the-clinical-trial-landscape-in-duchenne-muscular-dystrophy-challenges-opportunities-and-consideration-of-a-possible-cholesterol-metabolism-related-target/
CATEGORIES:Clinical Trials,Healthcare,Patient Focused,Policy,Research Focused,Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20241212T120000
DTEND;TZID=America/Denver:20241212T130000
DTSTAMP:20260410T040437
CREATED:20241207T065249Z
LAST-MODIFIED:20241207T065249Z
UID:7180-1734004800-1734008400@canadianrdn.ca
SUMMARY:Canadian Fragile X Research Rounds: Protein Replacement Therapy for Fragile X Syndrome
DESCRIPTION:
URL:https://canadianrdn.ca/event/canadian-fragile-x-research-rounds-protein-replacement-therapy-for-fragile-x-syndrome/
CATEGORIES:Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241206T080000
DTEND;TZID=UTC:20241207T170000
DTSTAMP:20260410T040437
CREATED:20241112T225700Z
LAST-MODIFIED:20241112T225700Z
UID:6985-1733472000-1733590800@canadianrdn.ca
SUMMARY:Duchenne Patient Academy 2024!
DESCRIPTION:This year\, the 8th edition of Duchenne Patient Academy will take place. The Academy provides online training for Duchenne and Becker muscular dystrophy (DMD/BMD) patient advocates. \nDuchenne Patient Academy 2024 will take place on Friday December 6\, and Saturday December 7 fully online. \nOver the course of 2 days\, Duchenne Patient Academy attendees will listen to speakers and attend panel discussions moderated by experts in their respective fields. As with last year\, attendees have the opportunity to become involved in the dialogue and share their experiences.
URL:https://canadianrdn.ca/event/duchenne-patient-academy-2024/
CATEGORIES:Events,Patient Focused,Policy,Research Focused,Virtual
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/11/Screen-Shot-2020-09-21-at-12.19.48-e1600697688245.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20241202T080000
DTEND;TZID=America/Denver:20241203T170000
DTSTAMP:20260410T040437
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/Halifax:20241126T080000
DTEND;TZID=America/Halifax:20241127T170000
DTSTAMP:20260410T040437
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=America/Halifax:20241124T080000
DTEND;TZID=America/Halifax:20241125T170000
DTSTAMP:20260410T040437
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=Europe/Paris:20241120T170000
DTEND;TZID=Europe/Paris:20241120T180000
DTSTAMP:20260410T040437
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:20241120T130000
DTEND;TZID=America/Chicago:20241120T140000
DTSTAMP:20260410T040437
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=America/Chicago:20241107T130000
DTEND;TZID=America/Chicago:20241107T140000
DTSTAMP:20260410T040437
CREATED:20241031T211720Z
LAST-MODIFIED:20241031T211720Z
UID:6874-1730984400-1730988000@canadianrdn.ca
SUMMARY:Measuring the Value of Genomics in Healthcare
DESCRIPTION:This virtual workshop will focus on exchanging strategies\, tools and experience in measuring the value of genomic testing in healthcare. Demonstrating value is key in informing health technology assessments (HTAs)\, clinical practice and policy decisions and yet standardized outcome measures and frameworks are still in their infancy. The task of demonstrating value is further complicated by genomic technologies and their clinical applications continuing to evolve at pace.
URL:https://canadianrdn.ca/event/measuring-the-value-of-genomics-in-healthcare/
CATEGORIES:Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/10/22ddcbc7-2021-4d95-a9f8-02c0612d0602.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20241031T120000
DTEND;TZID=America/Denver:20241031T130000
DTSTAMP:20260410T040437
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;VALUE=DATE:20241031
DTEND;VALUE=DATE:20241101
DTSTAMP:20260410T040437
CREATED:20240819T214035Z
LAST-MODIFIED:20240819T214035Z
UID:5210-1730332800-1730419199@canadianrdn.ca
SUMMARY:Developing Therapies in Rare Neuromuscular Disease
DESCRIPTION: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 opportunities to pose questions to the speakers\, fostering meaningful dialogue and knowledge exchange.
URL:https://canadianrdn.ca/event/developing-therapies-in-rare-neuromuscular-disease/
CATEGORIES:Conferences,Healthcare,In Person,International,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20241022T100000
DTEND;TZID=Europe/Helsinki:20241025T180000
DTSTAMP:20260410T040437
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/New_York:20241009T130000
DTEND;TZID=America/New_York:20241009T150000
DTSTAMP:20260410T040437
CREATED:20240923T214350Z
LAST-MODIFIED:20240923T214350Z
UID:5918-1728478800-1728486000@canadianrdn.ca
SUMMARY:ALS Canada Webinar: Medical Assistance in Dying (MAID) in Canada
DESCRIPTION:
URL:https://canadianrdn.ca/event/als-canada-webinar-medical-assistance-in-dying-maid-in-canada/
CATEGORIES:Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240926T080000
DTEND;TZID=America/New_York:20240928T170000
DTSTAMP:20260410T040437
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=Asia/Karachi:20240925T080000
DTEND;TZID=Asia/Karachi:20240928T203000
DTSTAMP:20260410T040437
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=UTC:20240925T080000
DTEND;TZID=UTC:20240928T170000
DTSTAMP:20260410T040437
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=America/New_York:20240916T190000
DTEND;TZID=America/New_York:20240916T200000
DTSTAMP:20260410T040437
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;TZID=Australia/Melbourne:20240916T080000
DTEND;TZID=Australia/Melbourne:20240920T170000
DTSTAMP:20260410T040437
CREATED:20240522T222536Z
LAST-MODIFIED:20240531T022852Z
UID:4138-1726473600-1726851600@canadianrdn.ca
SUMMARY:Global Alliance for Genomics and Health - 12th Plenary
DESCRIPTION:GA4GH 12th Plenary brings together organisations and initiatives from the genomics and health community for keynotes\, talks\, and workshops. The conference will focus on genomic and clinical data sharing issues that pervade diverse industries\, disciplines\, and communities.
URL:https://canadianrdn.ca/event/global-alliance-for-genomics-and-health-12th-plenary/
LOCATION:Park Hyatt Melbourne\, Melbourne\, Australia
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20240909T080000
DTEND;TZID=America/Denver:20240911T170000
DTSTAMP:20260410T040437
CREATED:20240809T210908Z
LAST-MODIFIED:20240809T210938Z
UID:5091-1725868800-1726074000@canadianrdn.ca
SUMMARY:C-Path 2024 Global Impact Conference
DESCRIPTION:Attendees of the 3-day conference\, including patients\, providers\, researchers\, clinicians\, biopharmaceutical companies\, regulatory reviewers and scientists\, will leave with knowledge of: \n\nAccelerating drug development across neurology\, rare diseases\, pediatrics\, and beyond.\nIntegrating insights across therapeutic areas to advance the process for novel treatments and cures.\nThe power of every precious data point in rare and orphan diseases.\nNavigating novel therapies with novel evidence sources.\nInnovative methods and approaches.\nThe value and impact that C-Path partnerships have on accelerating drug development.
URL:https://canadianrdn.ca/event/c-path-2024-global-impact-conference/
CATEGORIES:Clinical Trials,Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/C-PATH1.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240904T080000
DTEND;TZID=America/Halifax:20240906T170000
DTSTAMP:20260410T040437
CREATED:20240522T221425Z
LAST-MODIFIED:20240531T023310Z
UID:4132-1725436800-1725642000@canadianrdn.ca
SUMMARY:Canada's Drug Agency 2024 Symposium: From Disruption to Opportunity: Embracing Change in Health Care
DESCRIPTION:Symposium 2024 will delve into the strategies\, technologies\, and best practices that can help HTA providers and health care decision-makers navigate disruption and unlock new opportunities\, including appropriate use of health technology. \nDiscover how embracing change can lead to innovative HTA methods\, greater equity\, enhanced patient care\, and more effective use of data and analytics. Network with Canadian and international experts and forge valuable connections that can drive future collaborations and partnerships.
URL:https://canadianrdn.ca/event/canadas-drug-agency-2024-symposium-from-disruption-to-opportunity-embracing-change-in-health-care/
LOCATION:Shaw Centre\, Ottawa\, Ontario\, Canada
CATEGORIES:Conferences,Hybrid,Industry,National,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240829T080000
DTEND;TZID=UTC:20240831T170000
DTSTAMP:20260410T040437
CREATED:20240523T212750Z
LAST-MODIFIED:20240531T023825Z
UID:4213-1724918400-1725123600@canadianrdn.ca
SUMMARY:21st BI-ANNUAL NATIONAL SCLERODERMA CONFERENCE
DESCRIPTION:Held in beautiful St. John’s\, NL\, the 21st Bi-Annual National Scleroderma Conference offers an information-rich opportunity for people living with scleroderma\, their caregivers\, family members\, friends\, and medical professionals.  \n​Research updates\, panel discussions\, keynotes\, workshops\, and other educational sessions are led by leading scleroderma researchers\, healthcare professionals and other industry leading professionals. Whether you are newly diagnosed or have had scleroderma for many years\, the National Conference is a great way to learn about the disease and become connected with others that are dealing with scleroderma.
URL:https://canadianrdn.ca/event/21st-bi-annual-national-scleroderma-conference/
LOCATION:St John’s Conference Centre\, St John's\, Newfoundland\, Canada
CATEGORIES:Conferences,Healthcare,In Person,National,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240731T120000
DTEND;TZID=America/Halifax:20240731T140000
DTSTAMP:20260410T040437
CREATED:20240706T004655Z
LAST-MODIFIED:20240706T004655Z
UID:4765-1722427200-1722434400@canadianrdn.ca
SUMMARY:CHILD-BRIGHT Network - Applying Anti-Racism Principles in Healthcare
DESCRIPTION:Join us for “Applying Anti-Racism Principles in Health Care\,” on July 31\, 12:00-2:00 p.m. EST/10:00 a.m.-12:00 p.m. PST. In this interactive workshop\, Anna Hossain will be exploring systemic racism in the health care and research sectors. \nKey highlights: \n\n\nRecognize and understand the impacts of unconscious bias in health care interactions and relationships \n\n\nUnderstand the foundations of anti-racism and anti-oppression \n\n\nGain practical tools to mitigate bias and support inclusive leadership
URL:https://canadianrdn.ca/event/child-bright-network-applying-anti-racism-principles-in-healthcare/
CATEGORIES:Healthcare,National,Patient Focused,Policy,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240716T083000
DTEND;TZID=America/Halifax:20240716T173000
DTSTAMP:20260410T040437
CREATED:20240711T204023Z
LAST-MODIFIED:20240711T204023Z
UID:4806-1721118600-1721151000@canadianrdn.ca
SUMMARY:Pediatric Inclusion Roundtable - Effective Inclusion of Children Early in Clinical Trials
DESCRIPTION:Join Leavitt Partners\, LLC\, and Friedreich’s Ataxia Research Alliance (FARA) for the Pediatric Inclusion Roundtable: Effective Inclusion of Children Early in Clinical Trials. The program will engage all stakeholders regarding the need for including children earlier in clinical development\, the requirements for early inclusion\, and the most effective means for meeting those requirements.
URL:https://canadianrdn.ca/event/pediatric-inclusion-roundtable-effective-inclusion-of-children-early-in-clinical-trials/
CATEGORIES:Conferences,Events,Healthcare,Hybrid,International,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Dubai:20240711T130000
DTEND;TZID=Asia/Dubai:20240711T140000
DTSTAMP:20260410T040437
CREATED:20240610T200514Z
LAST-MODIFIED:20240610T200514Z
UID:4391-1720702800-1720706400@canadianrdn.ca
SUMMARY:CADTH: CDA-AMC Webinar – An Update on the Development of Newborn Screening Guidance in Canada 
DESCRIPTION:Join Dr. Hilary Vallance and Whitney Ayoub-Goulstone\, cochairs of the Newborn Screening Advisory Panel\, provide an update on our work to develop pan-Canadian guidance for newborn screening programs across the country in support of the Government of Canada’s National Strategy for Drugs for Rare Diseases. This update will focus on the foundational elements in scope for the advisory panel\, including developing a proposed common set of guiding principles for newborn screening\, exploring a proposed process and the criteria for the addition or removal of conditions\, and recommending conditions that newborn screening programs in Canada could screen. \nAs part of this event\, a discussion paper will be posted on our website with an open call for feedback.
URL:https://canadianrdn.ca/event/cadth-cda-amc-webinar-an-update-on-the-development-of-newborn-screening-guidance-in-canada/
CATEGORIES:National,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/06/GJDkJuDWAAA1F_J.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240711
DTEND;VALUE=DATE:20240712
DTSTAMP:20260410T040437
CREATED:20240516T210656Z
LAST-MODIFIED:20240531T025304Z
UID:4104-1720656000-1720742399@canadianrdn.ca
SUMMARY:North America Rare Diseases Summit 2024
DESCRIPTION:This event brings together leading researchers\, healthcare professionals\, patient advocates\, policymakers\, industry experts\, and rare disease patients and families. The summit emphasizes the power of collaboration and solidarity in facing rare diseases.
URL:https://canadianrdn.ca/event/north-america-rare-diseases-summit-2024/
LOCATION:Radisson Blu Aqua Hotel\, Chicago\, IL\, United States
CATEGORIES:Conferences,In Person,Industry,International,Policy,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/05/https___a8320c040ef1cfa0d3d4fe4c8801b0ae.cdn_.bubble.io_f1708629607077x199225686610369900_Chicago20july20.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Stockholm:20240626T170000
DTEND;TZID=Europe/Stockholm:20240628T180000
DTSTAMP:20260410T040437
CREATED:20240522T220746Z
LAST-MODIFIED:20240531T025542Z
UID:4129-1719421200-1719597600@canadianrdn.ca
SUMMARY:6th Fibrodysplasia Ossificans Progressiva (FOP) Drug Development Forum
DESCRIPTION:The Drug Development Forum (DDF) brings together biotech and pharmaceutical companies\, academic researchers and clinician scientists to collaborate and advance Fibrodysplasia Ossificans Progressiva (FOP) research. It’s an opportunity to discuss emerging FOP data and highlight gaps in our understanding of FOP disease pathogenesis that could offer new therapeutic options. The June 2024 event offers both in-person and virtual attendance options. Due to the content being shared\, only FOP family members who are invited to speak or are members of the International Presidents’ Council or IFOPA’s Research Committee may register. \nWith the first-ever treatment for FOP approved in select countries and five active FOP clinical trials\, there is still an abundance of preclinical research with the potential to be translated into safe and effective new medicines. Molecules advancing drug discovery\, advanced therapeutic modalities and new technologies must continually be explored for their potential to treat understudied signs and symptoms of FOP.
URL:https://canadianrdn.ca/event/6th-fibrodysplasia-ossificans-progressiva-fop-drug-development-forum/
LOCATION:Elite Hotel Tower Marina\, Stockholm\, Sweden
CATEGORIES:Clinical Trials,Conferences,Healthcare,Hybrid,Industry,International,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240626T100000
DTEND;TZID=America/Chicago:20240626T110000
DTSTAMP:20260410T040437
CREATED:20240612T001524Z
LAST-MODIFIED:20240612T001524Z
UID:4418-1719396000-1719399600@canadianrdn.ca
SUMMARY:RITA Patient-Centered: Social rights of a person with a rare disease and the patient perspective in advocacy\, the case of Malta
DESCRIPTION:The new ERN RITA Patient-Centered Webinar Series is made by the Education Working Group with patients advocates active in the ERN RITA and focuses on the unique needs and challenges faced by immunological rare disease patients and their caregivers. \nFor this next session\, they will have Raquel Castro\, Social Policy and Initiatives Director at EURORDIS-Rare Diseases Europe\, and Sina Bugeja\, Health Promotion Specialist and lecturer at the University of Malta in two presentations: \n\nAccess to social rights: barriers\, key issues and how can you take part to an upcoming Rare Barometer survey.\nThe patient perspective in advocacy: the case of Malta. How to put rare diseases on the European agenda? How can an advocacy committee reach out to MEPs to seek their endorsement?
URL:https://canadianrdn.ca/event/rita-patient-centered-social-rights-of-a-person-with-a-rare-disease-and-the-patient-perspective-in-advocacy-the-case-of-malta/
CATEGORIES:International,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Dubai:20240620T120000
DTEND;TZID=Asia/Dubai:20240620T130000
DTSTAMP:20260410T040437
CREATED:20240613T020315Z
LAST-MODIFIED:20240613T020315Z
UID:4435-1718884800-1718888400@canadianrdn.ca
SUMMARY:LGBTQ+ Health Care Praxis: Building More Equitable and Just Futures Today
DESCRIPTION:This conference is part of the Montréal Health Ethics Lecture Series 2024. It will be presented in English. \nHow might we build more equitable and just futures for LGBTQ+ people and communities\, and what does health care have to do with it? This talk explores the connections between care ethics\, care practices\, organizational cultures\, and praxis—that is\, the practical application of theories in our work—in the context of LGBTQ+ health care. Informed by historical and contemporary examples\, it offers opportunities for solidarity and collective resistance among patients and providers working together to dismantle and transform unjust systems
URL:https://canadianrdn.ca/event/lgbtq-health-care-praxis-building-more-equitable-and-just-futures-today/
CATEGORIES:National,Patient Focused,Policy,Provincial,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Dubai:20240618T120000
DTEND;TZID=Asia/Dubai:20240618T140000
DTSTAMP:20260410T040437
CREATED:20240613T015758Z
LAST-MODIFIED:20240613T015758Z
UID:4432-1718712000-1718719200@canadianrdn.ca
SUMMARY:Is this okay? Community attitudes on using health data in research in Canada and Australia: A cross-cultural exchange
DESCRIPTION:The access and use of health data for research raises concerns related to privacy\, commercial motives\, equity and fairness for members of the public who want to know who is using data generated from their personal information and why. But despite concerns\, there are clear benefits to using health data in research\, including better patient care\, better health system planning\, and better understanding of disease and wellness. \nIn this two-hour\, interactive workshop co-hosted by HDRN Canada. and PHRN Australia\, Julia Burt and Dr. Annette Braunack-Mayer will discuss how public engagement and dialogue can help us understand community attitudes about the use of health data in research. They will explore why members of the public support the use of health data in research and under what conditions\, as well as reservations or concerns that arise. Julia and Annette will compare engagement methods from their respective research projects on community attitudes related to the use of health data in research\, and share findings from Canada and Australia. \n 
URL:https://canadianrdn.ca/event/is-this-okay-community-attitudes-on-using-health-data-in-research-in-canada-and-australia-a-cross-cultural-exchange/
CATEGORIES:Healthcare,International,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240615T090000
DTEND;TZID=Europe/Helsinki:20240619T130000
DTSTAMP:20260410T040437
CREATED:20240522T220015Z
LAST-MODIFIED:20240531T030223Z
UID:4126-1718442000-1718802000@canadianrdn.ca
SUMMARY:Health Technology Assessment International Annual Meeting 2024
DESCRIPTION:Held each year in June\, the HTAi Annual Meeting is a key international gathering for sharing cutting-edge research\, advancing discussions in policy and methods\, and building global networks. \nThroughout the 5-day conference\, attendees to interact with colleagues from different countries\, exchange ideas and expertise\, reconnect with old friends and grow new collaborations and supportive and lasting connections. The HTAi Annual Meeting provides a unique environment to develop international collaborations and face the challenges posed in our local and global health systems today. Through continuous growth and expansion\, the meeting consistently draws together a large number of researchers\, agencies\, policy makers\, industry\, academia\, health service providers\, and patients/consumers to share information and best practices from cutting-edge technologies to system development with a focus on the impact on patient care. All parties interested in health technology assessment are welcomed. \nThe HTAi Annual Meeting supports HTAi’s mission to promote the development\, understanding and use of HTA around the world as a means of fostering innovation and effective use of resources in health care.
URL:https://canadianrdn.ca/event/health-technology-assessment-international-annual-meeting-2024/
LOCATION:Barcelo Convetion Centre\, Seville\, Spain
CATEGORIES:Conferences,Hybrid,Industry,International,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/05/56316fbf151848af957d7269a156e0d3.jpg
END:VEVENT
END:VCALENDAR