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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=Europe/Helsinki:20240606T160000
DTEND;TZID=Europe/Helsinki:20240606T170000
DTSTAMP:20260411T115730
CREATED:20240523T203325Z
LAST-MODIFIED:20240523T203325Z
UID:4192-1717689600-1717693200@canadianrdn.ca
SUMMARY:Gene Therapy Webinar Series: Episode 7 – Health technology assessment (HTA) of genetic therapies
DESCRIPTION:Oriana Ciani is an Associate Professor of Practice in the Public Management and Policy\, Health Economics\, and HTA (Health Technology Assessment) Area at SDA Bocconi School of Management. \nHer collaboration with SDA began in 2010. She coordinates the Epidemiology and Public Health module in the “Master of International Health Care Management\, Economics and Politics” (MIHMEP) and teaches in numerous training courses for healthcare professionals on health economics and economic evaluation of healthcare interventions. \nHer research interests focus on the use of Health Technology Assessment (HTA) in healthcare decision-making processes\, methodological aspects of health technology assessments\, particularly in the field of medical devices and digital technologies\, evidence synthesis to inform policy choices. Oriana earned her PhD from the University of Exeter Medical School (UK) with a thesis on the validation of surrogate outcomes\, which remains one of her main areas of interest.
URL:https://canadianrdn.ca/event/gene-therapy-webinar-series-episode-7-health-technology-assessment-hta-of-genetic-therapies/
CATEGORIES:International,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240609T140000
DTEND;TZID=America/New_York:20240609T160000
DTSTAMP:20260411T115730
CREATED:20240604T000124Z
LAST-MODIFIED:20240604T000124Z
UID:4374-1717941600-1717948800@canadianrdn.ca
SUMMARY:CAP/ACP Porphyria Genes Presentation and Annual General Meeting Registration
DESCRIPTION:Join Dr. Aneal Khan to learn about the genetic basis of porphyria and the implications of new advancements in genetics for the diagnosis and treatment of rare diseases like porphyria!
URL:https://canadianrdn.ca/event/cap-acp-porphyria-genes-presentation-and-annual-general-meeting-registration/
CATEGORIES:Healthcare,National,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20240612T100000
DTEND;TZID=Europe/Paris:20240614T140000
DTSTAMP:20260411T115730
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=Europe/Helsinki:20240613T160000
DTEND;TZID=Europe/Helsinki:20240613T170000
DTSTAMP:20260411T115730
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:20260411T115730
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:20260411T115730
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=America/New_York:20240626T120000
DTEND;TZID=America/New_York:20240626T130000
DTSTAMP:20260411T115730
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;VALUE=DATE:20240627
DTEND;VALUE=DATE:20240630
DTSTAMP:20260411T115730
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240627T160000
DTEND;TZID=Europe/Helsinki:20240627T170000
DTSTAMP:20260411T115730
CREATED:20240523T204117Z
LAST-MODIFIED:20240523T204117Z
UID:4201-1719504000-1719507600@canadianrdn.ca
SUMMARY:Gene Therapy Webinar Series: Episode 10 – Genetic therapies and therapy developments for SMA
DESCRIPTION:Jan Kirschner (Professor of Pediatric Neurology) has been joint coordinator of the German network for neuromuscular disorders MD-NET (www.md-net.org) since 2008. He has been involved in planning and conducting several multicentre clinical trials. He was responsible for the coordination of a large multi-centre\, placebo-controlled MD-NET trial in Duchenne muscular dystrophy. Jan has established the Care and Trial Site Registry (CTSR) containing feasibility information about neuromuscular centres worldwide. Jan has coordinated the CARE-NMD project funded by the European Union (2010-2013)  with the aim to improve standard of care for Duchenne muscular dystrophy throughout Europe (www.care-nmd.eu). He has a long-standing interest in the diagnosis and treatment of myopathies\, muscular dystrophies\, and motoneuron diseases in children and adolescence. He is an experienced clinical researcher in this area. Jan and his team have established the SMArtCARE network to collect real-world data for patients with SMA in German speaking countries (www.smartcare.de).
URL:https://canadianrdn.ca/event/gene-therapy-webinar-series-episode-10-genetic-therapies-and-therapy-developments-for-sma/
CATEGORIES:International,Research Focused,Virtual,Webinars
END:VEVENT
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