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X-WR-CALNAME:Canadian Rare Disease Network
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X-WR-CALDESC:Events for Canadian Rare Disease Network
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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
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BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20240612T100000
DTEND;TZID=Europe/Paris:20240614T140000
DTSTAMP:20260521T080003
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
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BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240615T090000
DTEND;TZID=Europe/Helsinki:20240619T130000
DTSTAMP:20260521T080003
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
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BEGIN:VEVENT
DTSTART;TZID=Asia/Dubai:20240618T120000
DTEND;TZID=Asia/Dubai:20240618T140000
DTSTAMP:20260521T080003
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=Asia/Dubai:20240620T120000
DTEND;TZID=Asia/Dubai:20240620T130000
DTSTAMP:20260521T080003
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=America/Chicago:20240626T100000
DTEND;TZID=America/Chicago:20240626T110000
DTSTAMP:20260521T080003
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=Europe/Stockholm:20240626T170000
DTEND;TZID=Europe/Stockholm:20240628T180000
DTSTAMP:20260521T080003
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
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