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DTSTART:20230326T010000
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DTSTART:20250330T010000
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DTSTART:20251026T010000
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BEGIN:STANDARD
TZOFFSETFROM:+0400
TZOFFSETTO:+0400
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END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241009T130000
DTEND;TZID=America/New_York:20241009T150000
DTSTAMP:20260411T053836
CREATED:20240923T214350Z
LAST-MODIFIED:20240923T214350Z
UID:5918-1728478800-1728486000@canadianrdn.ca
SUMMARY:ALS Canada Webinar: Medical Assistance in Dying (MAID) in Canada
DESCRIPTION:
URL:https://canadianrdn.ca/event/als-canada-webinar-medical-assistance-in-dying-maid-in-canada/
CATEGORIES:Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241008T120000
DTEND;TZID=America/Chicago:20241008T130000
DTSTAMP:20260411T053836
CREATED:20241001T220753Z
LAST-MODIFIED:20241001T220753Z
UID:5948-1728388800-1728392400@canadianrdn.ca
SUMMARY:Understanding the importance of the social determinants of health for children and youth with disabilities
DESCRIPTION:
URL:https://canadianrdn.ca/event/understanding-the-importance-of-the-social-determinants-of-health-for-children-and-youth-with-disabilities/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241008T080000
DTEND;TZID=America/Chicago:20241008T170000
DTSTAMP:20260411T053836
CREATED:20240917T220608Z
LAST-MODIFIED:20240917T220608Z
UID:5826-1728374400-1728406800@canadianrdn.ca
SUMMARY:PxP Webinar 3 2024: Different opportunities to engage as a patient partner
DESCRIPTION:The webinar series is all about patient engagement in health research\, also known as patient and public involvement (UK) or consumer involvement (Australia). It is worth mentioning that ‘patient engagement’ in health research is distinctly different from signing up to be a research participant. Taking part in a study as a participant (for example trying a new treatment or management program) can be a great way to help advance healthcare\, but the role would not generally include giving input into the research study itself.
URL:https://canadianrdn.ca/event/pxp-webinar-3-2024-different-opportunities-to-engage-as-a-patient-partner/
CATEGORIES:Caregiver,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241008T080000
DTEND;TZID=UTC:20241008T090000
DTSTAMP:20260411T053836
CREATED:20240830T231304Z
LAST-MODIFIED:20240830T231304Z
UID:5529-1728374400-1728378000@canadianrdn.ca
SUMMARY:ERKNet/ESPN Webinar: "Ciliopathies" by Marijn Stokeman
DESCRIPTION:
URL:https://canadianrdn.ca/event/erknet-espn-webinar-ciliopathies-by-marijn-stokeman/
CATEGORIES:Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240926T090000
DTEND;TZID=America/Chicago:20240926T223000
DTSTAMP:20260411T053836
CREATED:20240919T214708Z
LAST-MODIFIED:20240919T214708Z
UID:5886-1727341200-1727389800@canadianrdn.ca
SUMMARY:The important elements of the Medicine Wheel" with Dr. Terri-Lynn Fox
DESCRIPTION:This session will provide a brief overview of the medicine wheel\, why it is important\, and how it supports emotional\, spiritual\, mental\, and physical health and healing. Led by Dr. Terri-Lynn Fox [Aai’piihkwikomotaakii]\, Indigenous Scholar on Indian Residential Schools and Truth and Reconciliation\, this 75-minute session includes a presentation and will be followed by a discussion period where attendees can submit questions and comments on the topic. While we hope you can join the live webinar\, it will be recorded and available on the Arthritis Community Learning Circle’s “Arthritis Call to Action” website following the presentation.
URL:https://canadianrdn.ca/event/the-important-elements-of-the-medicine-wheel-with-dr-terri-lynn-fox/
CATEGORIES:Healthcare,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/09/Medicine-wheel.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240926T090000
DTEND;TZID=America/Chicago:20240926T103000
DTSTAMP:20260411T053836
CREATED:20240812T211852Z
LAST-MODIFIED:20240812T211852Z
UID:5106-1727341200-1727346600@canadianrdn.ca
SUMMARY:Autoimmune Encephalitis and Immune-mediated Epilepsies
DESCRIPTION:
URL:https://canadianrdn.ca/event/autoimmune-encephalitis-and-immune-mediated-epilepsies/
CATEGORIES:Healthcare,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/Epicare-1.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240925T150000
DTEND;TZID=America/Chicago:20240925T160000
DTSTAMP:20260411T053836
CREATED:20240819T213654Z
LAST-MODIFIED:20240819T213654Z
UID:5205-1727276400-1727280000@canadianrdn.ca
SUMMARY:Turner syndrome and fertility options
DESCRIPTION:Register now for a presentation by Professor Janielle van der Velden\, paediatric endocrinologist\, Radboudumc\, Amalia Children’s Hospital\, Nijmegen and expert in Turner syndrome. \nEvent chaired by MTG7 chair Hedi Claahsen\, paediatric endocrinologist\, Radboudumc\, Amalia Children’s Hospital\, Nijmegen
URL:https://canadianrdn.ca/event/turner-syndrome-and-fertility-options/
CATEGORIES:Events,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/video-conference-5167472_1280-768x461-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240925T120000
DTEND;TZID=America/New_York:20240925T130000
DTSTAMP:20260411T053836
CREATED:20240819T211851Z
LAST-MODIFIED:20240819T211851Z
UID:5184-1727265600-1727269200@canadianrdn.ca
SUMMARY:Webinar - 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/webinar-designing-effectiveness-implementation-hybrid-trials-in-child-health-research/
CATEGORIES:Clinical Trials,Healthcare,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240924T190000
DTEND;TZID=America/Chicago:20240924T200000
DTSTAMP:20260411T053836
CREATED:20240819T213400Z
LAST-MODIFIED:20240819T213400Z
UID:5203-1727204400-1727208000@canadianrdn.ca
SUMMARY:'Clinical neurophysiology in dystonia' by Anke Snijders
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).
URL:https://canadianrdn.ca/event/clinical-neurophysiology-in-dystonia-by-anke-snijders/
CATEGORIES:Healthcare,Patient Focused,Research Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/08/8f22890e-e95f-4472-bce2-c61975661dd0.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240919T120000
DTEND;TZID=America/New_York:20240919T130000
DTSTAMP:20260411T053836
CREATED:20240904T001559Z
LAST-MODIFIED:20240904T001559Z
UID:5571-1726747200-1726750800@canadianrdn.ca
SUMMARY:Webinar - Clinical trials across the lifespan: Considerations for trials with pregnant people and children
DESCRIPTION:Webinar objectives:\n1. Identify reasons why more clinical trials should include children and pregnant people \n2. Describe additional considerations for designing\, operating\, and communicating about clinical trials with pregnant people and children \n3. Discuss opportunities and challenges for considering clinical trials across the life span with IMPaCT and PregTrials
URL:https://canadianrdn.ca/event/webinar-clinical-trials-across-the-lifespan-considerations-for-trials-with-pregnant-people-and-children/
CATEGORIES:Clinical Trials,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20240919T100000
DTEND;TZID=America/Denver:20240919T113000
DTSTAMP:20260411T053836
CREATED:20240830T231126Z
LAST-MODIFIED:20240830T231126Z
UID:5527-1726740000-1726745400@canadianrdn.ca
SUMMARY:IPNA Webinar: Chronic kidney disease care in low resource settings: Can we make it a smooth ride for children?
DESCRIPTION:The webinar will discuss the challenges and barriers to optimal pediatric CKD care in low-resource settings and invite experts to discuss potential solutions to address the inequities in care. The webinar will discuss patient and family perspectives and the need for support.
URL:https://canadianrdn.ca/event/ipna-webinar-chronic-kidney-disease-care-in-low-resource-settings-can-we-make-it-a-smooth-ride-for-children/
CATEGORIES:Caregiver,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240918T140000
DTEND;TZID=Europe/Helsinki:20240918T153000
DTSTAMP:20260411T053836
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:20260411T053836
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240911T120000
DTEND;TZID=America/Halifax:20240911T130000
DTSTAMP:20260411T053836
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=America/Denver:20240910T080000
DTEND;TZID=America/Denver:20240910T090000
DTSTAMP:20260411T053836
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/New_York:20240904T100000
DTEND;TZID=America/New_York:20240904T160000
DTSTAMP:20260411T053836
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=UTC:20240828T190000
DTEND;TZID=UTC:20240828T203000
DTSTAMP:20260411T053836
CREATED:20240801T205502Z
LAST-MODIFIED:20240801T205502Z
UID:4911-1724871600-1724877000@canadianrdn.ca
SUMMARY:Exploring the Brain – Advocating for Your Child with Disabilities
DESCRIPTION:Are you a parent\, caregiver or educator looking for ways to best support a child or children with disabilities? Join panelists for this upcoming webinar! They’ll cover crucial topics to help you advocate and achieve results for your child. Learn how to navigate the individualized education program (IEP) process effectively; foster a positive\, inclusive school experience; and find inclusive community activities and services. They’ll explore community and social opportunities to enhance your child’s development and discuss planning for a successful transition from school to adulthood. Don’t miss this chance to gain valuable insights and connect with experts dedicated to empowering you and your child.
URL:https://canadianrdn.ca/event/exploring-the-brain-advocating-for-your-child-with-disabilities/
CATEGORIES:Caregiver,Healthcare,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240821T120000
DTEND;TZID=America/Halifax:20240821T130000
DTSTAMP:20260411T053836
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240819T130000
DTEND;TZID=America/New_York:20240819T140000
DTSTAMP:20260411T053836
CREATED:20240819T212411Z
LAST-MODIFIED:20240819T212411Z
UID:5191-1724072400-1724076000@canadianrdn.ca
SUMMARY:Prioritizing Disability Inclusion in Health Research
DESCRIPTION:Join members of the CHILD-BRIGHT National Youth Advocacy Council on Aug. 19 at 1 p.m. ET/10 a.m. PT as they explore the crucial importance of including people with disabilities in health research focused on equity\, diversity\, inclusion\, decolonization\, and Indigenization (EDI-DI). They will define key concepts such as tokenism\, infantilization\, and non-inclusive environments\, leading to a discussion of why inclusion is essential and an overview of elements of inclusive research practice.
URL:https://canadianrdn.ca/event/prioritizing-disability-inclusion-in-health-research/
CATEGORIES:Caregiver,Events,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240815T150000
DTEND;TZID=America/Chicago:20240815T160000
DTSTAMP:20260411T053836
CREATED:20240807T015544Z
LAST-MODIFIED:20240807T015811Z
UID:4949-1723734000-1723737600@canadianrdn.ca
SUMMARY:Showing Up 101
DESCRIPTION:“Showing Up 101” is a gently guided\, grief informed experience intended to share a language of loss\, introduce frameworks for grieving and coping\, and promote openness and connection for moving with loss. The content is grounded in bereavement-science\, lived experience\, and movement-based practices for regulating ourselves. In this 60 minute session\, participants will feel equipped and empowered to integrate loss language in their lives\, to better communicate how they are feeling to themselves and others\, and to understand the power of community for sustaining the hardest\, most painful losses. The session is led by Myra Sack\, a bereaved mother who is also a Compassionate Bereavement Care Provider\, Founder of E-Motion\, Inc.\, and the author of Fifty-Seven Fridays: Losing Our Daughter\, Finding Our Way.
URL:https://canadianrdn.ca/event/showing-up-101/
CATEGORIES:Caregiver,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240811T110000
DTEND;TZID=America/Chicago:20240811T123000
DTSTAMP:20260411T053836
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:20260411T053836
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/Halifax:20240731T120000
DTEND;TZID=America/Halifax:20240731T140000
DTSTAMP:20260411T053836
CREATED:20240706T004655Z
LAST-MODIFIED:20240706T004655Z
UID:4765-1722427200-1722434400@canadianrdn.ca
SUMMARY:CHILD-BRIGHT Network - Applying Anti-Racism Principles in Healthcare
DESCRIPTION:Join us for “Applying Anti-Racism Principles in Health Care\,” on July 31\, 12:00-2:00 p.m. EST/10:00 a.m.-12:00 p.m. PST. In this interactive workshop\, Anna Hossain will be exploring systemic racism in the health care and research sectors. \nKey highlights: \n\n\nRecognize and understand the impacts of unconscious bias in health care interactions and relationships \n\n\nUnderstand the foundations of anti-racism and anti-oppression \n\n\nGain practical tools to mitigate bias and support inclusive leadership
URL:https://canadianrdn.ca/event/child-bright-network-applying-anti-racism-principles-in-healthcare/
CATEGORIES:Healthcare,National,Patient Focused,Policy,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Amsterdam:20240723T150000
DTEND;TZID=Europe/Amsterdam:20240723T160000
DTSTAMP:20260411T053836
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:20260411T053836
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;VALUE=DATE:20240717
DTEND;VALUE=DATE:20240718
DTSTAMP:20260411T053836
CREATED:20240621T203740Z
LAST-MODIFIED:20240627T031559Z
UID:4696-1721174400-1721260799@canadianrdn.ca
SUMMARY:Sneak Peek into Rare Disease Day 2025
DESCRIPTION:Join our upcoming webinar for a sneak peek into Rare Disease Day 2025! \nOn Wednesday 17 July we will be hosting three webinars throughout the day to cater to different time zones\, so no matter where you are in the world\, you can stay up to date on what to expect for the 2025 campaign. \nLearn more about the resources we are revamping and the brand-new downloads we will be producing (with the help of our creative agency and our global partners). We will also be sharing the creative concepts for 2025’s video and poster\, so you can start planning how you’d like to use our resources in your national contexts for Rare Disease Day 2025!
URL:https://canadianrdn.ca/event/sneak-peek-into-rare-disease-day-2025/
CATEGORIES:International,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240716T120000
DTEND;TZID=America/New_York:20240716T130000
DTSTAMP:20260411T053836
CREATED:20240603T234117Z
LAST-MODIFIED:20240603T234117Z
UID:4357-1721131200-1721134800@canadianrdn.ca
SUMMARY:RARE Storytelling Webinar
DESCRIPTION:While each rare disease presents unique challenges\, the common thread of stories and experiences unites us as a community. Global Genes rare storytelling initiative aims to empower individuals within the community with the tools to share their narratives through various mediums such as blogs\, articles\, in-person presentations\, and podcasts.
URL:https://canadianrdn.ca/event/rare-storytelling-webinar/
CATEGORIES:International,Patient Focused,Virtual,Webinars
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/06/Rare-story.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240716T083000
DTEND;TZID=America/Halifax:20240716T173000
DTSTAMP:20260411T053836
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:20260411T053836
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;TZID=America/Halifax:20240711T120000
DTEND;TZID=America/Halifax:20240711T133000
DTSTAMP:20260411T053836
CREATED:20240702T203619Z
LAST-MODIFIED:20240702T203619Z
UID:4716-1720699200-1720704600@canadianrdn.ca
SUMMARY:Tell Me More: Why is Obtaining a Diagnosis Challenging?
DESCRIPTION:We invite you to our next UDNF Tell Me More Lecture Series on Thursday\, July 11th  at 12:00 p..m. ET for Why is Obtaining a Diagnosis Challenging? – Navigating the Uncharted Waters of an Ultra Rare Disease. \nAre you an undiagnosed patient who has been on a long diagnostic odyssey? Come join us for a discussion of the various types of testing used to obtain a diagnosis and their limitations. The complexity of attaining a diagnosis will be explored. Tips to help shorten the diagnostic odyssey will be presented. Lastly\, strategies to remain hopeful while living undiagnosed will be shared.
URL:https://canadianrdn.ca/event/tell-me-more-why-is-obtaining-a-diagnosis-challenging/
CATEGORIES:Healthcare,International,Patient Focused,Virtual,Webinars
END:VEVENT
END:VCALENDAR