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X-ORIGINAL-URL:https://canadianrdn.ca
X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240610T123000
DTEND;TZID=America/New_York:20240610T133000
DTSTAMP:20260501T115155
CREATED:20240530T225729Z
LAST-MODIFIED:20240530T225729Z
UID:4308-1718022600-1718026200@canadianrdn.ca
SUMMARY:Corticosteroids and Neuromuscular Disorders
DESCRIPTION:Muscular Dystrophy Canada (MDC) is pleased to present a webinar on corticosteroids and how and why they are used in people diagnosed with neuromuscular disorders.
URL:https://canadianrdn.ca/event/corticosteroids-and-neuromuscular-disorders/
CATEGORIES:Healthcare,National,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20240612T100000
DTEND;TZID=Europe/Paris:20240614T140000
DTSTAMP:20260501T115155
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:20240613T160000
DTEND;TZID=Europe/Helsinki:20240613T170000
DTSTAMP:20260501T115155
CREATED:20240523T203723Z
LAST-MODIFIED:20240523T203723Z
UID:4195-1718294400-1718298000@canadianrdn.ca
SUMMARY:Gene Therapy Webinar Series: Episode 8 – Genetic therapies and therapy developments for ALS
DESCRIPTION:Dr Vázquez Costa has a  MD in Neurology (2012) and PhD in motor neuron diseases (2019). Since 2013 he is devoted to the care of motor neuron disease patients and in 2020 he was granted a Juan Rodés excellence contract from the Carlos III Health Institute\, to coordinate the motor neuron disease unit at Hospital la Fe. He also co-chairs the ALS Genetic Spanish consortium (ALSGESCO) and is member of the Spanish research network for rare diseases (CIBERER). This unit is a referral Spanish and European centre for the treatment and research in ALS and SMA\, and participates in the European Network to Cure ALS (ENCALS) and the TRICALS consortium. Dr Vázquez Costa has participated in more than 20 research projects and in more than 30 clinical trials in both ALS and SMA\, and has published more than 80 articles in indexed journals in neuromuscular diseases. He has carried out research stays at the Psychiatry department of the Universitätsklinikum in Freiburg (Germany) and at the Martinos Center for Biomedical Imaging in Boston (USA) and has collaborated and collaborates with researchers from numerous research institutes and universities. Since November 2019 he is an associate professor of neurology at the University of Valencia.
URL:https://canadianrdn.ca/event/gene-therapy-webinar-series-episode-8-genetic-therapies-and-therapy-developments-for-als/
CATEGORIES:International,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240619T160000
DTEND;TZID=UTC:20240619T170000
DTSTAMP:20260501T115155
CREATED:20240523T203919Z
LAST-MODIFIED:20240523T203919Z
UID:4198-1718812800-1718816400@canadianrdn.ca
SUMMARY:Gene Therapy Webinar Series – Episode 11: Safety issues in gene therapies and how to address them
DESCRIPTION:Professor Francesco Muntoni is a Paediatric Neurologist with an interest in clinical\, pathological and molecular aspects of neuromuscular disorders. \nHe is the director of the Dubowitz Neuromuscular Centre\, a leading clinical and research institution for children affected by neuromuscular disorders. At the centre more than 1\,600 children affected by neuromuscular diseases are assessed every year by a team of experts from different disciplines.
URL:https://canadianrdn.ca/event/gene-therapy-webinar-series-episode-11-safety-issues-in-gene-therapies-and-how-to-address-them/
CATEGORIES:International,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Dubai:20240620T120000
DTEND;TZID=Asia/Dubai:20240620T130000
DTSTAMP:20260501T115155
CREATED:20240613T001840Z
LAST-MODIFIED:20240613T001955Z
UID:4425-1718884800-1718888400@canadianrdn.ca
SUMMARY:Hidden in Plain Sight: Autosomal Dominant Tubulointerstitial Kidney Disease
DESCRIPTION:C-Path’s Rare and Orphan Disease Programs is excited to have Dr. Anthony Bleyer present their June webinar\, “Hidden in Plain Sight: Autosomal Dominant Tubulointerstitial Kidney Disease (ADTKD).” Dr. Bleyer is a Professor of Internal Medicine/Nephrology at Wake Forest University School of Medicine\, with adjunct appointments at the Broad Institute of Harvard Medical School and Massachusetts Institute of Technology\, and the Institute for Inherited Metabolic Disorders at Charles University\, Czech Republic. \nDr. Bleyer led the team that identified mutations in the UMOD gene as a cause of ADTKD and has been leading the Wake Forest Rare Inherited Kidney Disease team for the last 25 years. His presentation will cover the genetics of ADTKD\, its biology and mechanisms\, a description of the Wake Forest registry\, and unmet drug development needs. \nJoin C-Path for this valuable opportunity to gain insights from an expert in the field.
URL:https://canadianrdn.ca/event/hidden-in-plain-sight-autosomal-dominant-tubulointerstitial-kidney-disease/
CATEGORIES:Healthcare,International,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240626T080000
DTEND;TZID=UTC:20240629T180000
DTSTAMP:20260501T115155
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Stockholm:20240626T170000
DTEND;TZID=Europe/Stockholm:20240628T180000
DTSTAMP:20260501T115155
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;VALUE=DATE:20240627
DTEND;VALUE=DATE:20240630
DTSTAMP:20260501T115155
CREATED:20240612T221549Z
LAST-MODIFIED:20240613T000220Z
UID:4421-1719446400-1719705599@canadianrdn.ca
SUMMARY:IFPA Conference the 7th World Psoriasis & Psoriatic Arthritis Conference
DESCRIPTION:Established in 2006\, the IFPA Conference (also known as the World Psoriasis & Psoriatic Arthritis Conference) provides a unique\, cross-specialty platform. Medical and health professionals present frontline clinical research in dermatology\, rheumatology and beyond. Delegates can explore psoriatic disease from different perspectives by networking with patients and industry representatives in attendance. The IFPA conference calls for breakthroughs in research that will improve the understanding of all aspects of psoriatic disease. \nThe next conference will be held 27-29 June\, 2024 in Stockholm\, Sweden. \nThe theme of this Conference is: Uncovering the broad spectrum of psoriatic disease
URL:https://canadianrdn.ca/event/ifpa-conference-the-7th-world-psoriasis-psoriatic-arthritis-conference/
LOCATION:Stockholm Waterfront Congress Centre\, Nils Ericsons Plan 4\, Stockholm\, Sweden
CATEGORIES:Conferences,Events,In Person,Industry,International,Research Focused
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