BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Canadian Rare Disease Network - ECPv6.15.20//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
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:Europe/Stockholm
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: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:Europe/Helsinki
BEGIN:DAYLIGHT
TZOFFSETFROM:+0200
TZOFFSETTO:+0300
TZNAME:EEST
DTSTART:20230326T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0300
TZOFFSETTO:+0200
TZNAME:EET
DTSTART:20231029T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0200
TZOFFSETTO:+0300
TZNAME:EEST
DTSTART:20240331T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0300
TZOFFSETTO:+0200
TZNAME:EET
DTSTART:20241027T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0200
TZOFFSETTO:+0300
TZNAME:EEST
DTSTART:20250330T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0300
TZOFFSETTO:+0200
TZNAME:EET
DTSTART:20251026T010000
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:VTIMEZONE
TZID:America/Edmonton
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/Creston
BEGIN:STANDARD
TZOFFSETFROM:-0700
TZOFFSETTO:-0700
TZNAME:MST
DTSTART:20230101T000000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240711
DTEND;VALUE=DATE:20240712
DTSTAMP:20260410T040004
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:20260410T040004
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:20260410T040004
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/
LOCATION:WA
CATEGORIES:International,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Dubai:20240620T120000
DTEND;TZID=Asia/Dubai:20240620T130000
DTSTAMP:20260410T040004
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/
LOCATION:WA
CATEGORIES:National,Patient Focused,Policy,Provincial,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Dubai:20240618T120000
DTEND;TZID=Asia/Dubai:20240618T140000
DTSTAMP:20260410T040004
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/
LOCATION:WA
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:20260410T040004
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
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20240612T100000
DTEND;TZID=Europe/Paris:20240614T140000
DTSTAMP:20260410T040004
CREATED:20240522T215430Z
LAST-MODIFIED:20240531T030414Z
UID:4123-1718186400-1718373600@canadianrdn.ca
SUMMARY:World Congress for Rare Skin Disorders
DESCRIPTION:The objectives of the world congress for rare disorders are: \n\nTo learn on diagnosis (including pathophysiology and disease classification)\nTo develop a multidisciplinary approach and improve their skills to manage common problems in rare and complex skin disorders\nTo know more on last research findings and tools in the field of skin biology\, genetics\, therapeutics\nTo learn more on patient engagement and empowerment as well as patient education programs
URL:https://canadianrdn.ca/event/world-congress-for-rare-skin-disorders/
LOCATION:Maison Internationale\, Paris\, France
CATEGORIES:Healthcare,In Person,Industry,International,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/05/WCRSD_2024-bandeau1920x450-edd6593c.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240602T073000
DTEND;TZID=UTC:20240607T180000
DTSTAMP:20260410T040004
CREATED:20240529T004850Z
LAST-MODIFIED:20240531T031258Z
UID:4246-1717313400-1717783200@canadianrdn.ca
SUMMARY:Perinatal and Child Health Research Annual Meetings
DESCRIPTION:The realm of perinatal child health research is undergoing a rapid transformation. To enhance the well-being of our children and families\, it is imperative to foster collaborative research endeavors\, facilitate data sharing\, provide training\, and encourage networking among researchers and institutions. Consequently\, nine networks have united their annual meetings to facilitate connections and eliminate obstacles to top-tier health research and training. Our objective is to unite the Canadian perinatal and child health research community in a singular location—a historic first—where innovative ideas can flourish and a collaborative environment can be established.
URL:https://canadianrdn.ca/event/perinatal-and-child-health-research-annual-meetings/
LOCATION:Sheraton Wall Centre\, Vancouver\, British Columbia\, Canada
CATEGORIES:Caregiver,Clinical Trials,Conferences,Healthcare,In Person,National,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20240528T120000
DTEND;TZID=America/Edmonton:20240528T130000
DTSTAMP:20260410T040004
CREATED:20240523T204453Z
LAST-MODIFIED:20240523T204534Z
UID:4204-1716897600-1716901200@canadianrdn.ca
SUMMARY:Network 2 Network May Community Forum
DESCRIPTION:Register for the next N2 Canada Community Forum\, where N2 will celebrate International Clinical Trials Day! Raisa Chowdhury\, Project Coordinator from the Canadian Cancer Trials Network (3CTN) will present their new EDI way finder tool. Additionally\, Sarah Bridges\, Research Coordinator from the Maritime SPOR SUPPORT Unit and the N2 Public Engagement Committee Co-Chair will present their DIY community engagement toolkit.
URL:https://canadianrdn.ca/event/network-2-network-may-community-forum/
LOCATION:WA
CATEGORIES:Clinical Trials,National,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Creston:20240522T120000
DTEND;TZID=America/Creston:20240522T130000
DTSTAMP:20260410T040004
CREATED:20240516T210211Z
LAST-MODIFIED:20240522T025450Z
UID:4101-1716379200-1716382800@canadianrdn.ca
SUMMARY:A.I in Genomics
DESCRIPTION:A.I. in Genomics is a panel discussion and interactive Q & A with Dr. Orion Buske\, Chief Technology Officer of PhenoTips and technical lead for multiple international standards and data sharing initiatives in genetics\, and Dr. Mark Kiel\, Chief Scientific Officer and founder of Genomenon\, hosted by DNA Today’s Founder\, Producer\, and Host\, Kira Dineen\, CGC.
URL:https://canadianrdn.ca/event/a-i-in-genomics/
LOCATION:WA
CATEGORIES:National,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Edmonton:20240522T100000
DTEND;TZID=America/Edmonton:20240522T110000
DTSTAMP:20260410T040004
CREATED:20240516T035856Z
LAST-MODIFIED:20240522T025610Z
UID:4095-1716372000-1716375600@canadianrdn.ca
SUMMARY:Clinical trials in rare disease: The role of patient registries
DESCRIPTION:Therapies for rare diseases are emerging at a rapid pace yet rigorous evidence regarding their safety\, efficacy\, and effectiveness in practice is often sparse and is difficult to generate. High quality longitudinal patient registries may help to address this evidence gap.
URL:https://canadianrdn.ca/event/clinical-trials-in-rare-disease-the-role-of-patient-registries/
LOCATION:WA
CATEGORIES:National,Patient Focused,Policy,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240515T080000
DTEND;TZID=UTC:20240516T180000
DTSTAMP:20260410T040004
CREATED:20240514T213421Z
LAST-MODIFIED:20240531T032054Z
UID:4079-1715760000-1715882400@canadianrdn.ca
SUMMARY:European Conference on Rare Diseases 2024
DESCRIPTION:The European Conference on Rare Diseases and Orphan Products (ECRD) is the largest\, patient-led\, rare disease policy-shaping event held in Europe. By bringing together people with rare diseases and patient advocates\, policy makers\, healthcare industry representatives\, clinicians\, regulators and Member State representatives\, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease policies of the future. \nWith over 600 participants\, the Conference is an unrivalled opportunity to network and exchange invaluable insights within the rare disease community. Through collaborative efforts\, these discussions culminate in clear policy recommendations that can influence both EU and national policies. \nThe 12th ECRD is a fully hybrid conference taking place on 15 & 16 May 2024 online and at The Square in Brussels.
URL:https://canadianrdn.ca/event/european-conference-on-rare-diseases-2024/
LOCATION:The Square\, Brussels\, Belgium
CATEGORIES:Conferences,Hybrid,International,Patient Focused,Policy,Research Focused
END:VEVENT
END:VCALENDAR