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BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240918T140000
DTEND;TZID=Europe/Helsinki:20240918T153000
DTSTAMP:20260405T120106
CREATED:20240819T214922Z
LAST-MODIFIED:20240819T214922Z
UID:5219-1726668000-1726673400@canadianrdn.ca
SUMMARY:Rare Disease Day 2025 webinar: Enhancing Accessibility in Physical and Digital Spaces
DESCRIPTION:Join on 18 September at 2 pm (CEST\, UTC+2) for our Rare Disease Day Webinar\, “Enhancing Accessibility in Physical and Digital Spaces.” Discover innovative strategies for making environments more inclusive for people with rare diseases\, featuring insights from accessibility experts and patient advocates. Don’t miss this opportunity to engage in meaningful discussions with speakers Adéla Odrihocká (Czechia)\, James Buller (UK)\, and Andre Felix (Belgium) on how we can create a more accessible world together.
URL:https://canadianrdn.ca/event/rare-disease-day-2025-webinar-enhancing-accessibility-in-physical-and-digital-spaces/
CATEGORIES:Events,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240918T100000
DTEND;TZID=America/Chicago:20240918T110000
DTSTAMP:20260405T120106
CREATED:20240823T210648Z
LAST-MODIFIED:20240823T210648Z
UID:5366-1726653600-1726657200@canadianrdn.ca
SUMMARY:RITA Patient-Centered: Risk of Infection and Immunological Rare Diseases
DESCRIPTION:Join the webinar “Risk of Infection and Immunological Rare Diseases\,” featuring Dr. Laia Alsina\, MD\, PhD\, Chief of the Clinical Immunology and Primary Immunodeficiencies Reference Unit at Hospital Sant Joan de Déu\, Barcelona. This patient-centered webinar\, organised by RITA\, is part of a new series led by Education WG Chair Jordi Anton\, alongside Savino Sciascia and RITA patient groups. Discover insights into the latest research and clinical practices for managing rare immunological conditions.
URL:https://canadianrdn.ca/event/rita-patient-centered-risk-of-infection-and-immunological-rare-diseases/
CATEGORIES:Caregiver,Events,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/logo.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240917
DTEND;VALUE=DATE:20240918
DTSTAMP:20260405T120106
CREATED:20240827T013421Z
LAST-MODIFIED:20240827T013421Z
UID:5413-1726531200-1726617599@canadianrdn.ca
SUMMARY:EMPOWER & INSPIRE 3RD ANNUAL LEIGH SYNDROME SYMPOSIUM
DESCRIPTION:Empower & Inspire: Understanding and Accelerating Research for Leigh Syndrome\nTuesday\, September 17\, 2024 \nBrought to you by: \n​Cure Mito Foundation & integrative Cardiovascular Metabolism and Pathophysiology Laboratory (iCaMP) at Boston University \nFor details please visit curemito.org/conference \n 
URL:https://canadianrdn.ca/event/empower-inspire-3rd-annual-leigh-syndrome-symposium/
CATEGORIES:Conferences,Healthcare,Industry,Patient Focused,Research Focused,Virtual
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/Cure-Mito.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20240916T080000
DTEND;TZID=Australia/Melbourne:20240920T170000
DTSTAMP:20260405T120106
CREATED:20240522T222536Z
LAST-MODIFIED:20240531T022852Z
UID:4138-1726473600-1726851600@canadianrdn.ca
SUMMARY:Global Alliance for Genomics and Health - 12th Plenary
DESCRIPTION:GA4GH 12th Plenary brings together organisations and initiatives from the genomics and health community for keynotes\, talks\, and workshops. The conference will focus on genomic and clinical data sharing issues that pervade diverse industries\, disciplines\, and communities.
URL:https://canadianrdn.ca/event/global-alliance-for-genomics-and-health-12th-plenary/
LOCATION:Park Hyatt Melbourne\, Melbourne\, Australia
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240911T120000
DTEND;TZID=America/Halifax:20240911T130000
DTSTAMP:20260405T120106
CREATED:20240523T003752Z
LAST-MODIFIED:20240523T003752Z
UID:4163-1726056000-1726059600@canadianrdn.ca
SUMMARY:Designing effectiveness-implementation hybrid trials in child health research
DESCRIPTION:The webinar will introduce effectiveness-hybrid designs\, showcase examples\, and outline important considerations for conducting these types of studies. It will also briefly summarize tensions that may occur in conducting implementation research and mention tools to support implementation planning and execution.
URL:https://canadianrdn.ca/event/designing-effectiveness-implementation-hybrid-trials-in-child-health-research/
CATEGORIES:Clinical Trials,Healthcare,National,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20240911T080000
DTEND;TZID=Europe/Paris:20240914T170000
DTSTAMP:20260405T120106
CREATED:20240801T204730Z
LAST-MODIFIED:20240801T204730Z
UID:4902-1726041600-1726333200@canadianrdn.ca
SUMMARY:31st European Paediatric Rheumatology
DESCRIPTION:As always at PReS meetings\, the invited faculty represents internationally renowned clinicians and scientists who will present and discuss significant and exciting developments in pathophysiology\, diagnostics\, and clinical management of pediatric rheumatology. In the program they will recognize some of the favorites over the year: Grand debates and Thieves market. Added to that many outstanding presentations with varying themes. Also\, of course\, as tradition is\, they will find Young Investigators Meeting and EULAR Pediatric Ultrasound Course.
URL:https://canadianrdn.ca/event/31st-european-paediatric-rheumatology/
LOCATION:Sweden\, Gothenburg\, Sweden
CATEGORIES:Conferences,In Person,International,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240910T080000
DTEND;TZID=UTC:20240912T170000
DTSTAMP:20260405T120106
CREATED:20240730T203040Z
LAST-MODIFIED:20240730T203040Z
UID:4894-1725955200-1726160400@canadianrdn.ca
SUMMARY:PxP 2024 Conference (For Patients\, By Patients)
DESCRIPTION:Standing for ‘For Patients\, By Patients’\, PxP 2024 is entirely led by an international team of patient and public partners and is a Patients Included™ event. Our purpose is to share resources\, mentorship and community with patient partners and others involved in health research. Ultimately\, our goal is partnering to make research stronger. \nThis free\, virtual event aims to bring you a wealth of knowledge\, skills and resources on patient engagement in health research. 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. Whatever language you prefer\, we warmly welcome everyone to attend.
URL:https://canadianrdn.ca/event/pxp-2024-conference-for-patients-by-patients/
CATEGORIES:Caregiver,Conferences,Healthcare,Patient Focused,Research Focused,Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20240910T080000
DTEND;TZID=America/Denver:20240910T090000
DTSTAMP:20260405T120106
CREATED:20240830T230928Z
LAST-MODIFIED:20240830T230928Z
UID:5524-1725955200-1725958800@canadianrdn.ca
SUMMARY:ERKNet Webinar: "MGRS" by Roberta Fenoglio
DESCRIPTION:
URL:https://canadianrdn.ca/event/erknet-webinar-mgrs-by-roberta-fenoglio/
CATEGORIES:Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20240909T080000
DTEND;TZID=America/Denver:20240911T170000
DTSTAMP:20260405T120106
CREATED:20240809T210908Z
LAST-MODIFIED:20240809T210938Z
UID:5091-1725868800-1726074000@canadianrdn.ca
SUMMARY:C-Path 2024 Global Impact Conference
DESCRIPTION:Attendees of the 3-day conference\, including patients\, providers\, researchers\, clinicians\, biopharmaceutical companies\, regulatory reviewers and scientists\, will leave with knowledge of: \n\nAccelerating drug development across neurology\, rare diseases\, pediatrics\, and beyond.\nIntegrating insights across therapeutic areas to advance the process for novel treatments and cures.\nThe power of every precious data point in rare and orphan diseases.\nNavigating novel therapies with novel evidence sources.\nInnovative methods and approaches.\nThe value and impact that C-Path partnerships have on accelerating drug development.
URL:https://canadianrdn.ca/event/c-path-2024-global-impact-conference/
CATEGORIES:Clinical Trials,Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/C-PATH1.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Tokyo:20240905T080000
DTEND;TZID=Asia/Tokyo:20240907T170000
DTSTAMP:20260405T120106
CREATED:20240522T221845Z
LAST-MODIFIED:20240531T023045Z
UID:4135-1725523200-1725728400@canadianrdn.ca
SUMMARY:13th Conference of Undiagnosed Diseases Network International
DESCRIPTION:This event will be held in Seoul\, South Korea\, and promises to be an enriching experience filled with insightful discussions and valuable networking opportunities.
URL:https://canadianrdn.ca/event/13th-conference-of-undiagnosed-diseases-network-international/
LOCATION:Seoul National University Children’s Hospital\, Seoul\, Korea\, Republic of
CATEGORIES:Conferences,Healthcare,In Person,International,Patient Focused,Research Focused
ATTACH;FMTTYPE=application/pdf:https://canadianrdn.ca/wp-content/uploads/2024/05/e_poster_2024_udni_conference_final_1.pdf
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240904T100000
DTEND;TZID=America/New_York:20240904T160000
DTSTAMP:20260405T120106
CREATED:20240807T210627Z
LAST-MODIFIED:20240807T210627Z
UID:5017-1725444000-1725465600@canadianrdn.ca
SUMMARY:Scientific Advancements in Gene Therapies: Opportunities for Global Regulatory Convergence
DESCRIPTION:The Reagan-Udall Foundation for the FDA\, in collaboration with the Bill & Melinda Gates Foundation\, will host a hybrid public workshop on “Scientific Advancements in Gene Therapies: Opportunities for Global Regulatory Convergence.” \nGene therapies work by replacing\, silencing\, and/or modifying specific genes within a cell to treat\, prevent\, or cure a disease\, and have been used to treat both inherited diseases such as sickle cell disease and acquired disorders such as leukemia. \nThis public workshop will provide a baseline about the current state of gene therapy interventions\, including approved products and considerations for currently licensed gene therapy products and regulator roles regarding these therapies\, particularly in low and middle income countries; explore the “next generation” of gene therapies and the breadth of where those products might be deployed; and discuss the opportunities and needs for regulatory oversight of these products in emerging markets. Speakers will include patient advocates\, clinicians\, academic researchers\, biotech/pharma representatives\, and regulators.
URL:https://canadianrdn.ca/event/scientific-advancements-in-gene-therapies-opportunities-for-global-regulatory-convergence/
CATEGORIES:Hybrid,In Person,Industry,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/39f5c73d-521e-4971-85ec-2b7914ec65eb.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240904T080000
DTEND;TZID=America/Halifax:20240906T170000
DTSTAMP:20260405T120106
CREATED:20240522T221425Z
LAST-MODIFIED:20240531T023310Z
UID:4132-1725436800-1725642000@canadianrdn.ca
SUMMARY:Canada's Drug Agency 2024 Symposium: From Disruption to Opportunity: Embracing Change in Health Care
DESCRIPTION:Symposium 2024 will delve into the strategies\, technologies\, and best practices that can help HTA providers and health care decision-makers navigate disruption and unlock new opportunities\, including appropriate use of health technology. \nDiscover how embracing change can lead to innovative HTA methods\, greater equity\, enhanced patient care\, and more effective use of data and analytics. Network with Canadian and international experts and forge valuable connections that can drive future collaborations and partnerships.
URL:https://canadianrdn.ca/event/canadas-drug-agency-2024-symposium-from-disruption-to-opportunity-embracing-change-in-health-care/
LOCATION:Shaw Centre\, Ottawa\, Ontario\, Canada
CATEGORIES:Conferences,Hybrid,Industry,National,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240830T140000
DTEND;TZID=Europe/Helsinki:20240830T153000
DTSTAMP:20260405T120106
CREATED:20240819T212648Z
LAST-MODIFIED:20240819T212648Z
UID:5194-1725026400-1725031800@canadianrdn.ca
SUMMARY:WHA Resolution on Rare Diseases Webinar
DESCRIPTION:This year\, Rare Diseases International has begun advocating for the World Health Assembly to have a Resolution on Rare Diseases in 2025\, and we need your help to make it a success. This webinar\, co-hosted by RDI the Arab Republic of Egypt\, the State of Qatar\, and Spain will be an opportunity to explain in more detail the opportunities to improve the lives of persons living with a rare disease (PLWRD) and the need to make the Resolution a reality.
URL:https://canadianrdn.ca/event/wha-resolution-on-rare-diseases-webinar/
CATEGORIES:Caregiver,Events,International,Patient Focused,Research Focused,Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240829T080000
DTEND;TZID=UTC:20240831T170000
DTSTAMP:20260405T120106
CREATED:20240523T212750Z
LAST-MODIFIED:20240531T023825Z
UID:4213-1724918400-1725123600@canadianrdn.ca
SUMMARY:21st BI-ANNUAL NATIONAL SCLERODERMA CONFERENCE
DESCRIPTION:Held in beautiful St. John’s\, NL\, the 21st Bi-Annual National Scleroderma Conference offers an information-rich opportunity for people living with scleroderma\, their caregivers\, family members\, friends\, and medical professionals.  \n​Research updates\, panel discussions\, keynotes\, workshops\, and other educational sessions are led by leading scleroderma researchers\, healthcare professionals and other industry leading professionals. Whether you are newly diagnosed or have had scleroderma for many years\, the National Conference is a great way to learn about the disease and become connected with others that are dealing with scleroderma.
URL:https://canadianrdn.ca/event/21st-bi-annual-national-scleroderma-conference/
LOCATION:St John’s Conference Centre\, St John's\, Newfoundland\, Canada
CATEGORIES:Conferences,Healthcare,In Person,National,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20240824T090000
DTEND;TZID=America/Denver:20240824T120000
DTSTAMP:20260405T120106
CREATED:20240819T230730Z
LAST-MODIFIED:20240819T230730Z
UID:5222-1724490000-1724500800@canadianrdn.ca
SUMMARY:Int'l Autoinflammatory Awareness Month 2024: Patient Care & Advocacy
DESCRIPTION:Learn about adult and pediatric care for autoinflammatory diseases\, research networks\, standup comedy\, patient advocacy plus breakout rooms.
URL:https://canadianrdn.ca/event/intl-autoinflammatory-awareness-month-2024-patient-care-advocacy/
CATEGORIES:Events,Healthcare,International,Patient Focused,Research Focused,Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240821T120000
DTEND;TZID=America/Halifax:20240821T130000
DTSTAMP:20260405T120106
CREATED:20240807T015306Z
LAST-MODIFIED:20240807T015306Z
UID:4945-1724241600-1724245200@canadianrdn.ca
SUMMARY:CORD Hosts Open Dialogue with Health Canada Webinar
DESCRIPTION:1st Bilateral agreement to deliver on Canada’s promise of accelerating access to therapies for rare disease patients has been signed with BC. Two drugs are listed in the announcement. How will the program work in BC and other provinces? Which provinces are next? Which drugs are next? How will patients and others be involved? Guest Speaker: Daniel MacDonald\, Director General\, Drugs for Rare Diseases\, Strategic Policy Branch\, Health Canada
URL:https://canadianrdn.ca/event/cord-hosts-open-dialogue-with-health-canada-webinar/
CATEGORIES:Healthcare,Provincial,Research Focused,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/1722967071892.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240811T110000
DTEND;TZID=America/Chicago:20240811T123000
DTSTAMP:20260405T120106
CREATED:20240806T204217Z
LAST-MODIFIED:20240806T204217Z
UID:4919-1723374000-1723379400@canadianrdn.ca
SUMMARY:Reproductive Health and Autoinflammatory Disease
DESCRIPTION:Have you ever wondered about how autoinflammatory diseases and their treatments affect your reproductive health? \nAs part of its Questions\, Answered series\, the Canadian Autoinflammatory Network – Réseau Auto-inflammatoire Canadien has invited University College London and NHS’ Dr. Helen Lachmann to teach autoinflammatory disease patients about covering conception\, pregnancy and breastfeeding in general\, as well as specifics concerning some specific drug interactions.
URL:https://canadianrdn.ca/event/reproductive-health-and-autoinflammatory-disease/
CATEGORIES:Healthcare,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240807T120000
DTEND;TZID=America/Halifax:20240807T130000
DTSTAMP:20260405T120106
CREATED:20240523T003302Z
LAST-MODIFIED:20240523T003302Z
UID:4160-1723032000-1723035600@canadianrdn.ca
SUMMARY:Considerations for effective integration of gender and sex in research and clinical trials
DESCRIPTION:In this session\, Dr. Natalie Rosen will explore best practice guidelines for researchers to build more equitable\, reflective\, and inclusive research and clinical trials with respect to gender and sex. Dr. Rosen will touch briefly on a variety of topics including\, participant eligibility\, recruitment\, sampling plans and data analysis\, measurement of genders and sexes\, responsiveness across time\, and working with validated scales. The objective is to stimulate critical thought about effective integration of sex and gender in research and clinical trials and to offer some key resources for continued learning.
URL:https://canadianrdn.ca/event/considerations-for-effective-integration-of-gender-and-sex-in-research-and-clinical-trials/
CATEGORIES:Clinical Trials,Healthcare,National,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240726T080000
DTEND;TZID=America/New_York:20240728T170000
DTSTAMP:20260405T120106
CREATED:20240529T195854Z
LAST-MODIFIED:20240531T023953Z
UID:4277-1721980800-1722186000@canadianrdn.ca
SUMMARY:Platelet Disorder Support Association-ITP Conference 2024
DESCRIPTION:This year\, PDSA will host its 24th annual update on immune thrombocytopenia (ITP) for patients\, caregivers and the medical community in San Antonio\, Texas July 26-28. This year’s patient conference will take place at The Westin Riverwalk in downtown San Antonio. Each year the ITP conference provides opportunities to hear the latest information about ITP\, meet others who are coping and living with ITP and receive answers to your medical questions. You will also have the opportunity to ask your questions to PDSA’s Medical Advisors\, who are some of the most experienced ITP doctors in the world. You don’t want to miss out on this tremendous opportunity to hear and talk with these world-renowned experts. \nIn addition to the educational program and social events\, the conference will feature several small group sessions to give you an opportunity to get to know other patients and caregivers in an intimate environment. They will also offer programs for children at our Kids Kamp for children ages 5-12. Like conferences in the past\, this year’s conference will provide a separate track for teens and young adults.
URL:https://canadianrdn.ca/event/platelet-disorder-support-association-itp-conference-2024/
LOCATION:The Westin Riverwalk\, San Antonio\, TX\, United States
CATEGORIES:Caregiver,Conferences,Healthcare,In Person,International,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Amsterdam:20240723T150000
DTEND;TZID=Europe/Amsterdam:20240723T160000
DTSTAMP:20260405T120106
CREATED:20240706T003742Z
LAST-MODIFIED:20240706T005308Z
UID:4762-1721746800-1721750400@canadianrdn.ca
SUMMARY:EURO-NMD Gene Therapy Webinar Series - Genetic therapies and therapy developments for rare movement disorders
DESCRIPTION:Willeke van Roon-Mom is a full professor of Human Genetics\, in particular of translational studies of neurodegenerative disorders. Her work is highly translational in nature\, working in close collaboration with clinical departments and industry. Unique patient-driven fund raising initiatives contribute not only financial input\, but also patient perspective to research programs in her group. The main topic of her research is autosomal dominant neurodegenerative diseases that have aberrant protein aggregation as a pathological hallmark. She studies molecular disease mechanisms\, identifies biomarkers and then uses this knowledge to develop novel therapies with a focus on RNA targeting antisense oligonucleotide therapies. She is the co-founder and co-lead of the Dutch Center for RNA Therapeutics that aims to develop RNA targeting therapies for patients with ultra-rare mutations.
URL:https://canadianrdn.ca/event/euro-nmd-gene-therapy-webinar-series-genetic-therapies-and-therapy-developments-for-rare-movement-disorders/
CATEGORIES:Healthcare,International,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/07/euro-nmd-gene-therapies.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240717T120000
DTEND;TZID=America/Halifax:20240717T130000
DTSTAMP:20260405T120106
CREATED:20240523T002927Z
LAST-MODIFIED:20240523T002927Z
UID:4157-1721217600-1721221200@canadianrdn.ca
SUMMARY:Racial and Ethnic Diversity in Pediatric Clinical Trials: Current Barriers and a Path Towards Inclusive Clinical Trial Design and Conduct
DESCRIPTION:Webinar objectives: \n1. Understand the role that historical and ongoing marginalization play in research participation \n2. Discuss how research findings in homogeneous populations are not generalizable to all children \n3. Describe research approaches that can improve diversity and inclusion in pediatric clinical trials
URL:https://canadianrdn.ca/event/racial-and-ethnic-diversity-in-pediatric-clinical-trials-current-barriers-and-a-path-towards-inclusive-clinical-trial-design-and-conduct/
CATEGORIES:Clinical Trials,Healthcare,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240717T080000
DTEND;TZID=America/Halifax:20240721T170000
DTSTAMP:20260405T120106
CREATED:20240523T211126Z
LAST-MODIFIED:20240531T024910Z
UID:4207-1721203200-1721581200@canadianrdn.ca
SUMMARY:2024 Global Learning Conference
DESCRIPTION:The Ehlers-Danlos Society is delighted to welcome you to register for our 2024 Global Learning Conference in Philadelphia\, Pennsylvania\, USA! Ehlers-Danlos Society will be hosting this exciting hybrid event\, both in-person and virtually. Join individuals and families with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) for up to five days of learning\, collaboration\, and networking. \nThe conference theme is “EDS and HSD: From Head to Toe” and will feature presentations\, case studies\, and panel discussions led by experts on the management of symptoms and comorbidities from head to toe in EDS and HSD. The event is suitable for community members and their friends and families\, as well as healthcare professionals.
URL:https://canadianrdn.ca/event/2024-global-learning-conference/
LOCATION:Philadelphia Marriott Downtown\, Philadelphia\, PA\, United States
CATEGORIES:Caregiver,Conferences,Healthcare,Hybrid,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240716T083000
DTEND;TZID=America/Halifax:20240716T173000
DTSTAMP:20260405T120106
CREATED:20240711T204023Z
LAST-MODIFIED:20240711T204023Z
UID:4806-1721118600-1721151000@canadianrdn.ca
SUMMARY:Pediatric Inclusion Roundtable - Effective Inclusion of Children Early in Clinical Trials
DESCRIPTION:Join Leavitt Partners\, LLC\, and Friedreich’s Ataxia Research Alliance (FARA) for the Pediatric Inclusion Roundtable: Effective Inclusion of Children Early in Clinical Trials. The program will engage all stakeholders regarding the need for including children earlier in clinical development\, the requirements for early inclusion\, and the most effective means for meeting those requirements.
URL:https://canadianrdn.ca/event/pediatric-inclusion-roundtable-effective-inclusion-of-children-early-in-clinical-trials/
CATEGORIES:Conferences,Events,Healthcare,Hybrid,International,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Dubai:20240711T130000
DTEND;TZID=Asia/Dubai:20240711T140000
DTSTAMP:20260405T120106
CREATED:20240610T200514Z
LAST-MODIFIED:20240610T200514Z
UID:4391-1720702800-1720706400@canadianrdn.ca
SUMMARY:CADTH: CDA-AMC Webinar – An Update on the Development of Newborn Screening Guidance in Canada 
DESCRIPTION:Join Dr. Hilary Vallance and Whitney Ayoub-Goulstone\, cochairs of the Newborn Screening Advisory Panel\, provide an update on our work to develop pan-Canadian guidance for newborn screening programs across the country in support of the Government of Canada’s National Strategy for Drugs for Rare Diseases. This update will focus on the foundational elements in scope for the advisory panel\, including developing a proposed common set of guiding principles for newborn screening\, exploring a proposed process and the criteria for the addition or removal of conditions\, and recommending conditions that newborn screening programs in Canada could screen. \nAs part of this event\, a discussion paper will be posted on our website with an open call for feedback.
URL:https://canadianrdn.ca/event/cadth-cda-amc-webinar-an-update-on-the-development-of-newborn-screening-guidance-in-canada/
CATEGORIES:National,Policy,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/06/GJDkJuDWAAA1F_J.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240711
DTEND;VALUE=DATE:20240714
DTSTAMP:20260405T120106
CREATED:20240613T210500Z
LAST-MODIFIED:20240613T210500Z
UID:4439-1720656000-1720915199@canadianrdn.ca
SUMMARY:PRISMS Leads the Way To Support Those Living with Smith-Magenis Syndrome at 12th International Conference
DESCRIPTION:PRISMS 12th International Conference is the largest conference specifically focused on Smith-\nMagenis Syndrome (SMS) in the world. The conference goal is to educate and share information about SMS while providing opportunities for engagement and community amongst SMS families and professionals. This educational and family support multi-day event is a critical program for the SMS community. \nThe conference theme is “Leading the Way Together” and will share the most recent advances in diagnosis\, treatments\, and management of SMS throughout the lifespan. \nRegistration for PRISMS’ 12th International Conference is now open. The conference will be held at the Hyatt Regency in Dallas\, TX July 11-14\, 2024.
URL:https://canadianrdn.ca/event/prisms-leads-the-way-to-support-those-living-with-smith-magenis-syndrome-at-12th-international-conference/
LOCATION:Hyatt Regency Dallas\, Dallas\, TX\, United States
CATEGORIES:Caregiver,Conferences,Events,In Person,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240711
DTEND;VALUE=DATE:20240712
DTSTAMP:20260405T120106
CREATED:20240516T210656Z
LAST-MODIFIED:20240531T025304Z
UID:4104-1720656000-1720742399@canadianrdn.ca
SUMMARY:North America Rare Diseases Summit 2024
DESCRIPTION:This event brings together leading researchers\, healthcare professionals\, patient advocates\, policymakers\, industry experts\, and rare disease patients and families. The summit emphasizes the power of collaboration and solidarity in facing rare diseases.
URL:https://canadianrdn.ca/event/north-america-rare-diseases-summit-2024/
LOCATION:Radisson Blu Aqua Hotel\, Chicago\, IL\, United States
CATEGORIES:Conferences,In Person,Industry,International,Policy,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/05/https___a8320c040ef1cfa0d3d4fe4c8801b0ae.cdn_.bubble.io_f1708629607077x199225686610369900_Chicago20july20.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240708T080000
DTEND;TZID=America/Halifax:20240710T170000
DTSTAMP:20260405T120106
CREATED:20240523T010703Z
LAST-MODIFIED:20240531T025404Z
UID:4172-1720425600-1720630800@canadianrdn.ca
SUMMARY:The Global Cell & Gene Therapy Summit
DESCRIPTION:Cell and gene therapy represent intersecting fields of biomedical research with the shared goal of treating\, preventing\, or curing diseases. These approaches are aimed at understanding the underlying causes of various diseases\, ranging from rare and complex conditions to those with genetic or acquired origins. This rapidly expanding treatment approach is poised to address significant unmet medical needs across a wide range of conditions. However\, the conceptual framework of cell and gene therapy is both expensive and requires precision\, presenting challenges for industrial implementation and patient accessibility. \nEmerging tools and techniques in the market have facilitated the adaptability and utilization of cell and gene therapy. These advancements have made it easier to employ CGT as a method of treating diseases\, including rare and complex disorders\, single gene disorders\, and various types of cancer. With these advancements in mind\, the International Summit on Cell and Gene Therapy serves as a platform to explore the fundamental concepts of these transformative therapies. The summit brings together experts from academia and industry to discuss a range of topics related to cell and gene therapy\, including ethical considerations\, social implications\, tools\, techniques\, marketing strategies\, and the commercialization of cell and gene therapy products. It also showcases the latest research progress in CGT and explores opportunities for further enhancements in availability and productivity of these therapies. By fostering collaboration and knowledge exchange\, the summit aims to advance the field of cell and gene therapy\, benefiting patients worldwide.
URL:https://canadianrdn.ca/event/the-global-cell-gene-therapy-summit/
LOCATION:Boston Marriott Newton Hotel\, Boston\, MA\, United States
CATEGORIES:Healthcare,Hybrid,Industry,International,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/05/eventlogo-82-1706621390.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240704T130000
DTEND;TZID=America/Halifax:20240704T133000
DTSTAMP:20260405T120106
CREATED:20240621T201018Z
LAST-MODIFIED:20240621T201018Z
UID:4693-1720098000-1720099800@canadianrdn.ca
SUMMARY:ALS Clinical Trials Unboxed
DESCRIPTION:On Thursday\, July 4\, at 1 p.m. ET\, join ALS Canada for our next ALS Clinical Trials Unboxed webinar to learn more about ongoing ALS clinical trials. In this webinar\, Dr. Richard Robitaille from the Université de Montréal will present on an investigator-initiated trial of darifenacin.
URL:https://canadianrdn.ca/event/als-clinical-trials-unboxed/
CATEGORIES:Clinical Trials,Healthcare,National,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240702T030000
DTEND;TZID=Europe/Helsinki:20240702T160000
DTSTAMP:20260405T120106
CREATED:20240617T214620Z
LAST-MODIFIED:20240617T214620Z
UID:4447-1719889200-1719936000@canadianrdn.ca
SUMMARY:State of the art of clinical stage gene therapies for Leukodystrophies - EURO NMD
DESCRIPTION:Educational webinars on rare neurological\, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN). \nDr. Caroline Sevin is a pediatric neurologist at Kremlin Bicêtre hospital. She leads the French reference center for leukodystrophies in children at Kremlin Bicêtre hospital\, France. ‪She has long-standing interests in neurodegenerative metabolic diseases\, including lysosomal\, peroxysomal and mitochondrial diseases. She has a strong background in leukodystrophies\, particularly Adrenoleukodystrophy\, Metachromatic leukodystrophy and Krabbe disease. She’s part of international consortia for MLD and ALD. CS is PI or co-PI of several clinical trials\, mostly in ALD and MLD\, using innovative therapies (gene therapy\, intrathecal enzyme replacement therapy\, small molecules). Her research activity focuses on developing in vivo/ex vivo gene therapy and small molecules approaches for leukodystrophies.
URL:https://canadianrdn.ca/event/state-of-the-art-of-clinical-stage-gene-therapies-for-leukodystrophies-euro-nmd/
CATEGORIES:Healthcare,International,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240627T160000
DTEND;TZID=Europe/Helsinki:20240627T170000
DTSTAMP:20260405T120106
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
END:VCALENDAR