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X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240626T080000
DTEND;TZID=Europe/Helsinki:20240628T170000
DTSTAMP:20260410T082422
CREATED:20240523T211612Z
LAST-MODIFIED:20240531T025755Z
UID:4210-1719388800-1719594000@canadianrdn.ca
SUMMARY:International Society of Systemic Auto-Inflammatory Diseases(ISSAID) Summer School 2024
DESCRIPTION:ISSAID is delighted to announce the International Society of Systemic Autoinflammatory Disease (ISSAID) Summer School 2024 that will take place on the 26th-28th June 2024. \nThe attendance to the Summer School will be in-person and the venue will be Green Garden Hotel\, in beautiful Warsaw\, Poland. \nThe interactive programme is primarily aimed at junior physicians\, residents\, and fellows. During the course\, you will learn from expert physician-scientists on the recognition\, pathophysiology\, and management of the spectrum of systemic autoinflammatory diseases (SAID) and perplexing presentations of immunodysregulation\, autoinflammation and immunodeficiencies. Behçet’s disease and mimics\, IL-1 mediated diseases\, interferonopathies and undifferentiated SAID will be discussed from different perspectives involving international experts for each specific field. \nYou will gain knowledge on the diagnosis\, treatment\, and management of systemic autoinflammatory diseases\, using a combination of expert-led keynote presentations and case-based discussions. The objective of the Summer School is to support young investigators and clinicians in their training and day-to-day care of these complex diseases in their practice. Another objective is to promote collaborations\, which is a key to improve the care of patients with these rare conditions.
URL:https://canadianrdn.ca/event/international-society-of-systemic-auto-inflammatory-diseasesissaid-summer-school-2024/
LOCATION:Green Garden Hotel\, Warsaw\, Poland
CATEGORIES:Healthcare,In Person,International,Research Focused
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BEGIN:VEVENT
DTSTART;TZID=UTC:20240626T080000
DTEND;TZID=UTC:20240629T180000
DTSTAMP:20260410T082422
CREATED:20240514T211801Z
LAST-MODIFIED:20240531T025704Z
UID:4002-1719388800-1719684000@canadianrdn.ca
SUMMARY:MitoMed Conference 2024
DESCRIPTION:Each year\, the United Mitochondrial Disease Foundation (UMDF)’s Mitochondrial Medicine Conference brings together the best minds in mitochondrial medicine and gives patients and families the opportunity to meet some of the top clinical mitochondrial specialists from around the world. With over 700 attendees representing almost every state in the U.S. and more than 15 different countries\, the Conference is recognized as the world’s preeminent event for mitochondrial disease.
URL:https://canadianrdn.ca/event/mitomed-conference-2024/
LOCATION:Hilton Cleveland Downtown\, Cleveland\, OH\, United States
CATEGORIES:Conferences,In Person,Industry,International,Patient Focused,Research Focused
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240626T100000
DTEND;TZID=America/Chicago:20240626T110000
DTSTAMP:20260410T082422
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/Helsinki:20240626T100000
DTEND;TZID=Europe/Helsinki:20240626T120000
DTSTAMP:20260410T082422
CREATED:20240617T215846Z
LAST-MODIFIED:20240617T215846Z
UID:4450-1719396000-1719403200@canadianrdn.ca
SUMMARY:End-user Training for the EJP RD Virtual Platform
DESCRIPTION:EJP RD – European Joint Programme on Rare Diseases – End-user Training for the EJP RD Virtual Platform\nThis training is intended for potential users of the Virtual Platform (VP) that is developed in the context of the EJP RD Pillar 2 activities. \nAt the end of this webinar\, you will be able to:   \n\nDescribe how to interact with the Virtual Platform as a network of connected resources   \n\n\nIdentify different entry points of different types of users to the Virtual Platform \n\n\nState some current functionalities of the Virtual Platform Portal  \n\n\n\n\nGeneral introduction to the interface   \n\n\n\n\n\n\nWhere to find connected resources  \n\n\n\n\n\n\nWhat types of resources are available   \n\n\n\n\n\n\nHow to login  \n\n\n\n\n\n\nHow to search resources with different level of granularity  \n\n\n\n\nState functionalities that could be built on top of the Virtual Platform network (co-creation/co-development) 
URL:https://canadianrdn.ca/event/end-user-training-for-the-ejp-rd-virtual-platform/
CATEGORIES:Healthcare,International,Virtual,Webinars
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240626T120000
DTEND;TZID=America/New_York:20240626T130000
DTSTAMP:20260410T082422
CREATED:20240605T214324Z
LAST-MODIFIED:20240605T214324Z
UID:4386-1719403200-1719406800@canadianrdn.ca
SUMMARY:LGBTQIA+ Affirming Prenatal Genetic Counseling
DESCRIPTION:Join PhenoTips live on June 26th from 12 – 1 p.m EST\, for the 29th installment of PhenoTips’ Speaker Series\, “LGBTQIA+ Affirming Prenatal Genetic Counseling” LGBTQIA+ Affirming Prenatal Genetic Counseling is a discussion and interactive Q & A with Rozalia Valentine\, Genetic Counselor at Boston’s Children\, and Chelsea Wagner\, Lead Genetic Counselor at BillionToOne\, hosted by DNA Today’s Founder\, Producer\, and Host\, Kira Dineen\, CGC.
URL:https://canadianrdn.ca/event/lgbtqia-affirming-prenatal-genetic-counseling/
CATEGORIES:National,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Stockholm:20240626T170000
DTEND;TZID=Europe/Stockholm:20240628T180000
DTSTAMP:20260410T082422
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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