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X-WR-CALDESC:Events for Canadian Rare Disease Network
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UID:4114-1717747200-1717866000@canadianrdn.ca
SUMMARY:NORD Living Rare\, Living Stronger Patient and Family Forum 2024
DESCRIPTION:Th 2024 Living Rare\, Living Stronger NORD Patient and Family Forum will be held in Los Angeles\, CA at the Hilton Universal City on June 8. After six years\, they are excited to bring this program to the west coast! This event will bring together the incredible rare disease community for a day filled with learning\, networking\, and relationship building. The Living Rare Forum is an opportunity for people living with rare diseases and their families to come together\, often for the first time\, to gain practical knowledge on how to manage their health and live their best rare lives.
URL:https://canadianrdn.ca/event/nord-living-rare-living-stronger-patient-and-family-forum-2024/
LOCATION:Hilton Universal City\, Los Angeles\, CA\, United States
CATEGORIES:Caregiver,Healthcare,Hybrid,International,Patient Focused,Research Focused
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DTSTART;TZID=America/Denver:20240607T080000
DTEND;TZID=America/Denver:20240608T170000
DTSTAMP:20260425T003155
CREATED:20240522T214313Z
LAST-MODIFIED:20240531T030952Z
UID:4117-1717747200-1717866000@canadianrdn.ca
SUMMARY:CMT Clinical Trial Readiness Summit
DESCRIPTION:As new clinical trials emerge for Charcot-Marie-Tooth disease (CMT)\, the importance of optimizing measures\, endpoints and the participant experience has never been more urgent! Hereditary Neuropathy Foundation (HNF) is committed to de-risking upcoming trials by bridging the gap between clinical trial study teams and patient perspectives and experiences. \nThis impact-driven summit is a chance for all patients\, caregivers\, clinicians\, industry\, and regulatory to connect with one another to exchange ideas\, and engage in open discussions about the obstacles we face in designing and conducting CMT clinical trials. As HNF focuses on accelerating access to critical research data and specimens\, this summit will also include on-site CMT Biobank collection.
URL:https://canadianrdn.ca/event/cmt-clinical-trial-readiness-summit/
LOCATION:Loews Coronado Bay Resort\, San Diego\, CA\, United States
CATEGORIES:Caregiver,Clinical Trials,Conferences,Healthcare,Hybrid,Industry,International,Patient Focused
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DTSTART;TZID=Europe/Helsinki:20240615T090000
DTEND;TZID=Europe/Helsinki:20240619T130000
DTSTAMP:20260425T003155
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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DTSTART;TZID=Europe/Stockholm:20240626T170000
DTEND;TZID=Europe/Stockholm:20240628T180000
DTSTAMP:20260425T003155
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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