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X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240613T160000
DTEND;TZID=Europe/Helsinki:20240613T170000
DTSTAMP:20260410T124159
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=America/New_York:20240613T130000
DTEND;TZID=America/New_York:20240613T140000
DTSTAMP:20260410T124159
CREATED:20240603T234425Z
LAST-MODIFIED:20240603T234425Z
UID:4361-1718283600-1718287200@canadianrdn.ca
SUMMARY:Palliative Care Webinar
DESCRIPTION:Join Jett Foundation’s Community Webinar Series on June 13 to hear from Dr. Ashley Nichols on palliative care\, a medical care focused on relief from pain and symptoms of illnesses and diseases.
URL:https://canadianrdn.ca/event/palliative-care-webinar/
CATEGORIES:Healthcare,International,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20240612T100000
DTEND;TZID=Europe/Paris:20240614T140000
DTSTAMP:20260410T124159
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=America/New_York:20240611T110000
DTEND;TZID=America/New_York:20240611T120000
DTSTAMP:20260410T124159
CREATED:20240603T233441Z
LAST-MODIFIED:20240603T233441Z
UID:4354-1718103600-1718107200@canadianrdn.ca
SUMMARY:RARE Pride: A Queer Conversation
DESCRIPTION:Does your identity as LGBTQ+ intersect with your life as a rare disease patient\, parent\, caregiver or ally? Global Genes will be hosting a forum for stakeholders in the rare disease community to discuss their intersectionality as part of both the rare community and queer / LGBTQIA + community. Global Genes wanted to create a safe space for individuals to share their lived experience and provide support for each other.
URL:https://canadianrdn.ca/event/rare-pride-a-queer-conversation/
CATEGORIES:International,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20240607T080000
DTEND;TZID=America/Denver:20240608T170000
DTSTAMP:20260410T124159
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20240607T080000
DTEND;TZID=America/Denver:20240608T170000
DTSTAMP:20260410T124159
CREATED:20240522T213736Z
LAST-MODIFIED:20240531T031132Z
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
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/05/NRD-2308-LRLS-RIA-Save-the-Date-SM-Graphic_1-1024x1024-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240606T160000
DTEND;TZID=Europe/Helsinki:20240606T170000
DTSTAMP:20260410T124159
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=Europe/Helsinki:20240529T160000
DTEND;TZID=Europe/Helsinki:20240529T170000
DTSTAMP:20260410T124159
CREATED:20240523T202846Z
LAST-MODIFIED:20240523T202846Z
UID:4188-1716998400-1717002000@canadianrdn.ca
SUMMARY:Gene Therapy Webinar Series: Episode 6 – Genetic therapies and therapy developments for muscular dystrophies (DMD\, LGMD)
DESCRIPTION:Prof. Dr. Annemieke Aartsma-Rus is a professor of Translational Genetics at the Department of Human Genetics of the Leiden University Medical Center (LUMC\, the Netherlands). She played an important role in the development of antisense mediated exon skipping for Duchenne muscular dystrophy during her PhD research (2000-2004) at the LUMC. Her work currently focuses on developing antisense-mediated exon skipping as a therapy for Duchenne muscular dystrophy and rare brain diseases. This involves work in cell and animal models to improve efficiency of exon skipping\, studies in muscle pathology\, the identification of biomarkers\, studying the basics of pre-mRNA splicing and transcript processing and the generation and detailed analysis of mouse models.
URL:https://canadianrdn.ca/event/gene-therapy-webinar-series-episode-6-genetic-therapies-and-therapy-developments-for-muscular-dystrophies-dmd-lgmd/
CATEGORIES:International,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240523T160000
DTEND;TZID=Europe/Helsinki:20240523T170000
DTSTAMP:20260410T124159
CREATED:20240523T202503Z
LAST-MODIFIED:20240523T203046Z
UID:4185-1716480000-1716483600@canadianrdn.ca
SUMMARY:Gene Therapy Webinar Series – Episode 5: Genetic therapies and therapy developments for epileptic disorders
DESCRIPTION:Dimitri Kullmann is a consultant neurologist at the National Hospital for Neurology and Neurosurgery\, and professor of neurology at the UCL Queen Square Institute of Neurology. He trained in Oxford and London\, and is a Fellow of the Academy of Medical Sciences and of the Royal Society. He specialises in neurocritical care and myasthenia gravis. His research interests centre on mechanisms underlying normal and abnormal circuit function in the brain\, inherited and acquired disorders of ion channels (channelopathies) and gene therapy for epilepsy.
URL:https://canadianrdn.ca/event/genetic-therapies-and-therapy-developments-for-epileptic-disorders/
CATEGORIES:International,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Shanghai:20240523T120000
DTEND;TZID=Asia/Shanghai:20240525T183000
DTSTAMP:20260410T124159
CREATED:20240516T211254Z
LAST-MODIFIED:20240531T031819Z
UID:4107-1716465600-1716661800@canadianrdn.ca
SUMMARY:Global Rare Diseases Research Symposium
DESCRIPTION:IRDiRC is co-hosting together with Hope for Rare Foundation and Fudan University\, the Global Rare Diseases Research Symposium & The Second China Rare Disease Research and Translational Medicine Annual Conference on May 23-25 in Shanghai (China). \nThe conference will last for 2.5 days with 21 parallel sessions and several satellite meetings. It will bring together over 100 speakers from global universities\, hospitals\, academic institutions\, and pharmaceutical companies. Topics will cover basic research on rare diseases\, gene and cell therapies\, Investigator Initiated Trials\, clinical studies\, drug development\, and international research collaborations.
URL:https://canadianrdn.ca/event/global-rare-diseases-research-symposium/
LOCATION:Greenland International Convention Center\, Shanghai\, China
CATEGORIES:Clinical Trials,Conferences,Healthcare,In Person,Industry,International,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/05/Global-Rare-Diseases-Research-Symposium.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240523T080000
DTEND;TZID=America/New_York:20240526T170000
DTSTAMP:20260410T124159
CREATED:20240523T012330Z
LAST-MODIFIED:20240531T031934Z
UID:4175-1716451200-1716742800@canadianrdn.ca
SUMMARY:CureDuchenne FUTURES National Conference
DESCRIPTION:The CureDuchenne FUTURES National Conference is an annual event focused on bringing education\, connection\, and hope to the entire Duchenne community.
URL:https://canadianrdn.ca/event/cureduchenne-futures-national-conference/
LOCATION:JW Marriott Orlando\, Orlando\, FL\, United States
CATEGORIES:Caregiver,Conferences,Healthcare,In Person,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240515T080000
DTEND;TZID=UTC:20240516T180000
DTSTAMP:20260410T124159
CREATED:20240514T213421Z
LAST-MODIFIED:20240531T032054Z
UID:4079-1715760000-1715882400@canadianrdn.ca
SUMMARY:European Conference on Rare Diseases 2024
DESCRIPTION:The European Conference on Rare Diseases and Orphan Products (ECRD) is the largest\, patient-led\, rare disease policy-shaping event held in Europe. By bringing together people with rare diseases and patient advocates\, policy makers\, healthcare industry representatives\, clinicians\, regulators and Member State representatives\, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease policies of the future. \nWith over 600 participants\, the Conference is an unrivalled opportunity to network and exchange invaluable insights within the rare disease community. Through collaborative efforts\, these discussions culminate in clear policy recommendations that can influence both EU and national policies. \nThe 12th ECRD is a fully hybrid conference taking place on 15 & 16 May 2024 online and at The Square in Brussels.
URL:https://canadianrdn.ca/event/european-conference-on-rare-diseases-2024/
LOCATION:The Square\, Brussels\, Belgium
CATEGORIES:Conferences,Hybrid,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240514T080000
DTEND;TZID=UTC:20240516T170000
DTSTAMP:20260410T124159
CREATED:20240514T212304Z
LAST-MODIFIED:20240522T025953Z
UID:4077-1715673600-1715878800@canadianrdn.ca
SUMMARY:RARE Bootcamp
DESCRIPTION:The RARE Bootcamp is designed for patients and advocates who have started funding rare disease research and are looking to better coordinate and build structure around their efforts.  For more information or to register\, please email bootcamp@ultragenyx.com
URL:https://canadianrdn.ca/event/rare-bootcamp/
CATEGORIES:Events,International,Patient Focused,Research Focused,Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240509T130000
DTEND;TZID=America/New_York:20240509T143000
DTSTAMP:20260410T124159
CREATED:20240523T195914Z
LAST-MODIFIED:20240523T195914Z
UID:4178-1715259600-1715265000@canadianrdn.ca
SUMMARY:PxP Webinar 2 2024: Motivations for being a patient partner in research
DESCRIPTION:The webinar series is all about patient engagement in health research\, also known as patient and public involvement (in the UK) or consumer involvement (in Australia). ‘Patient engagement’ in health research is where patients are research team members. This is different from volunteering to be a research participant where you might help advance research or healthcare\, but a research participant generally does not give input into the research study itself.
URL:https://canadianrdn.ca/event/pxp-webinar-2-2024-motivations-for-being-a-patient-partner-in-research/
CATEGORIES:Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
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