BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Canadian Rare Disease Network - ECPv6.15.18//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-ORIGINAL-URL:https://canadianrdn.ca
X-WR-CALDESC:Events for Canadian Rare Disease Network
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20230312T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20231105T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20240310T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20241103T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20250309T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Halifax
BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
TZOFFSETTO:-0300
TZNAME:ADT
DTSTART:20230312T060000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0300
TZOFFSETTO:-0400
TZNAME:AST
DTSTART:20231105T050000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
TZOFFSETTO:-0300
TZNAME:ADT
DTSTART:20240310T060000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0300
TZOFFSETTO:-0400
TZNAME:AST
DTSTART:20241103T050000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
TZOFFSETTO:-0300
TZNAME:ADT
DTSTART:20250309T060000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0300
TZOFFSETTO:-0400
TZNAME:AST
DTSTART:20251102T050000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:UTC
BEGIN:STANDARD
TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20230101T000000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Denver
BEGIN:DAYLIGHT
TZOFFSETFROM:-0700
TZOFFSETTO:-0600
TZNAME:MDT
DTSTART:20230312T090000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0600
TZOFFSETTO:-0700
TZNAME:MST
DTSTART:20231105T080000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0700
TZOFFSETTO:-0600
TZNAME:MDT
DTSTART:20240310T090000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0600
TZOFFSETTO:-0700
TZNAME:MST
DTSTART:20241103T080000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0700
TZOFFSETTO:-0600
TZNAME:MDT
DTSTART:20250309T090000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0600
TZOFFSETTO:-0700
TZNAME:MST
DTSTART:20251102T080000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:Europe/Helsinki
BEGIN:DAYLIGHT
TZOFFSETFROM:+0200
TZOFFSETTO:+0300
TZNAME:EEST
DTSTART:20230326T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0300
TZOFFSETTO:+0200
TZNAME:EET
DTSTART:20231029T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0200
TZOFFSETTO:+0300
TZNAME:EEST
DTSTART:20240331T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0300
TZOFFSETTO:+0200
TZNAME:EET
DTSTART:20241027T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0200
TZOFFSETTO:+0300
TZNAME:EEST
DTSTART:20250330T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0300
TZOFFSETTO:+0200
TZNAME:EET
DTSTART:20251026T010000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Chicago
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20230312T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20231105T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20240310T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20241103T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20250309T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20251102T070000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:Europe/Amsterdam
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20230326T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20231029T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20240331T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20241027T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20250330T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20251026T010000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:Asia/Dubai
BEGIN:STANDARD
TZOFFSETFROM:+0400
TZOFFSETTO:+0400
TZNAME:+04
DTSTART:20230101T000000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240917
DTEND;VALUE=DATE:20240918
DTSTAMP:20260404T043100
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=America/Halifax:20240911T120000
DTEND;TZID=America/Halifax:20240911T130000
DTSTAMP:20260404T043100
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=UTC:20240910T080000
DTEND;TZID=UTC:20240912T170000
DTSTAMP:20260404T043100
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:20260404T043100
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:20260404T043100
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=Europe/Helsinki:20240830T140000
DTEND;TZID=Europe/Helsinki:20240830T153000
DTSTAMP:20260404T043100
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:20240828T190000
DTEND;TZID=UTC:20240828T203000
DTSTAMP:20260404T043100
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/Denver:20240824T090000
DTEND;TZID=America/Denver:20240824T120000
DTSTAMP:20260404T043100
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/New_York:20240819T130000
DTEND;TZID=America/New_York:20240819T140000
DTSTAMP:20260404T043100
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:20260404T043100
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
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/1722889759763.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240811T110000
DTEND;TZID=America/Chicago:20240811T123000
DTSTAMP:20260404T043100
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:20260404T043100
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:20260404T043100
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
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/07/anti-racism-principles.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Amsterdam:20240723T150000
DTEND;TZID=Europe/Amsterdam:20240723T160000
DTSTAMP:20260404T043100
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:20240720T113000
DTEND;TZID=America/Halifax:20240720T121500
DTSTAMP:20260404T043100
CREATED:20240716T201511Z
LAST-MODIFIED:20240716T201511Z
UID:4812-1721475000-1721477700@canadianrdn.ca
SUMMARY:Living with Rare Neuroimmune Conditions: Patient Views & Perspectives
DESCRIPTION:Please join Sumaira Ahmed\, NMOSD patient and founder of The Sumaira Foundation\, for a panel discussion featuring five patients living with rare neuroimmune conditions. Patient perspectives and lived experiences are essential to guiding R&D efforts and generating real-world evidence for therapeutic advances. This is especially true for rare diseases such as NMOSD\, MOGAD\, autoimmune encephalitis and stiff person syndrome. Yet far too often\, the voices of patients are overlooked\, marginalized or excluded. This is an opportunity to hear directly from a diverse group of patients living with these disorders who are also actively advocating for their communities. Sponsored by The Sumaira Foundation.
URL:https://canadianrdn.ca/event/living-with-rare-neuroimmune-conditions-patient-views-perspectives/
LOCATION:Hilton Atlanta\, Atlanta\, GA\, United States
CATEGORIES:Conferences,Events,Hybrid,International,Patient Focused,Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240717T120000
DTEND;TZID=America/Halifax:20240717T130000
DTSTAMP:20260404T043100
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:20260404T043100
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:20260404T043100
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:20260404T043100
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:20260404T043100
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:20260404T043100
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
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240710T143000
DTEND;TZID=Europe/Helsinki:20240710T163000
DTSTAMP:20260404T043100
CREATED:20240709T231051Z
LAST-MODIFIED:20240709T231051Z
UID:4770-1720621800-1720629000@canadianrdn.ca
SUMMARY:Webinar: Rare Barometer survey on the impact of rare diseases on everyday life
DESCRIPTION:On Wednesday 10 July\, Rare Barometer\, the global survey initiative of EURORDIS – Rare Diseases Europe\, will launch a new survey on the impact of rare diseases on everyday life. \nThe survey will be open to all people living with any rare disease and their family members worldwide and will be available in 25 languages\, from 10 July to 8 September. \nJoin us on 10 July for a webinar\, when we will discuss the objectives and content of this new survey\, how your participation can influence policy and advocacy\, and where we will present you with a communication toolkit to help disseminate the survey amongst your networks.
URL:https://canadianrdn.ca/event/webinar-rare-barometer-survey-on-the-impact-of-rare-diseases-on-everyday-life/
CATEGORIES:Caregiver,International,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240704T130000
DTEND;TZID=America/Halifax:20240704T133000
DTSTAMP:20260404T043100
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=America/Halifax:20240704T120000
DTEND;TZID=America/Halifax:20240704T133000
DTSTAMP:20260404T043100
CREATED:20240617T193011Z
LAST-MODIFIED:20240617T193011Z
UID:4443-1720094400-1720099800@canadianrdn.ca
SUMMARY:Questions\, Answered: Genetic Counselling & Autoinflammatory Diseases
DESCRIPTION:Have you ever wondered what genetics counselling is\, and how it works? \nAs part of its new Questions\, Answered series\, the Canadian Autoinflammatory Network – Réseau Autoinflammatoire Canadien has invited Montreal Clinical Research Institute’s genetic counsellors Valérie Poulin and Géraldine Gosse to teach autoinflammatory patients about genetics counselling and autoinflammatory diseases. \nDuring the presentation\, Valérie and Géraldine will present on the following topics: \n\nGenetics 101\nThe process of genetic testing\, the possible results and implications for patients and their family\nAn overview of the genetic heterogeneity of autoinflammatory syndromes\n\nFollowing the presentation\, there will be ample time for questions from the audience.
URL:https://canadianrdn.ca/event/questions-answered-genetic-counselling-autoinflammatory-diseases/
CATEGORIES:Caregiver,Healthcare,National,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20240702T030000
DTEND;TZID=Europe/Helsinki:20240702T160000
DTSTAMP:20260404T043100
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:20260404T043100
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
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240626T120000
DTEND;TZID=America/New_York:20240626T130000
DTSTAMP:20260404T043100
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;TZID=Europe/Helsinki:20240626T100000
DTEND;TZID=Europe/Helsinki:20240626T120000
DTSTAMP:20260404T043100
CREATED:20240617T215846Z
LAST-MODIFIED:20240617T215846Z
UID:4450-1719396000-1719403200@canadianrdn.ca
SUMMARY:End-user Training for the EJP RD Virtual Platform
DESCRIPTION:EJP RD – European Joint Programme on Rare Diseases – End-user Training for the EJP RD Virtual Platform\nThis training is intended for potential users of the Virtual Platform (VP) that is developed in the context of the EJP RD Pillar 2 activities. \nAt the end of this webinar\, you will be able to:   \n\nDescribe how to interact with the Virtual Platform as a network of connected resources   \n\n\nIdentify different entry points of different types of users to the Virtual Platform \n\n\nState some current functionalities of the Virtual Platform Portal  \n\n\n\n\nGeneral introduction to the interface   \n\n\n\n\n\n\nWhere to find connected resources  \n\n\n\n\n\n\nWhat types of resources are available   \n\n\n\n\n\n\nHow to login  \n\n\n\n\n\n\nHow to search resources with different level of granularity  \n\n\n\n\nState functionalities that could be built on top of the Virtual Platform network (co-creation/co-development) 
URL:https://canadianrdn.ca/event/end-user-training-for-the-ejp-rd-virtual-platform/
CATEGORIES:Healthcare,International,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240626T100000
DTEND;TZID=America/Chicago:20240626T110000
DTSTAMP:20260404T043100
CREATED:20240612T001524Z
LAST-MODIFIED:20240612T001524Z
UID:4418-1719396000-1719399600@canadianrdn.ca
SUMMARY:RITA Patient-Centered: Social rights of a person with a rare disease and the patient perspective in advocacy\, the case of Malta
DESCRIPTION:The new ERN RITA Patient-Centered Webinar Series is made by the Education Working Group with patients advocates active in the ERN RITA and focuses on the unique needs and challenges faced by immunological rare disease patients and their caregivers. \nFor this next session\, they will have Raquel Castro\, Social Policy and Initiatives Director at EURORDIS-Rare Diseases Europe\, and Sina Bugeja\, Health Promotion Specialist and lecturer at the University of Malta in two presentations: \n\nAccess to social rights: barriers\, key issues and how can you take part to an upcoming Rare Barometer survey.\nThe patient perspective in advocacy: the case of Malta. How to put rare diseases on the European agenda? How can an advocacy committee reach out to MEPs to seek their endorsement?
URL:https://canadianrdn.ca/event/rita-patient-centered-social-rights-of-a-person-with-a-rare-disease-and-the-patient-perspective-in-advocacy-the-case-of-malta/
CATEGORIES:International,Patient Focused,Policy,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240621T150000
DTEND;TZID=America/New_York:20240621T160000
DTSTAMP:20260404T043100
CREATED:20240603T234956Z
LAST-MODIFIED:20240603T234956Z
UID:4364-1718982000-1718985600@canadianrdn.ca
SUMMARY:Caregiver Connextion
DESCRIPTION:Join Jett Foundation’s monthly virtual support group for parents\, family members or caregivers of females who have been diagnosed with Duchenne muscular dystrophy or are symptomatic carriers.
URL:https://canadianrdn.ca/event/caregiver-connextion/
CATEGORIES:Caregiver,International,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
END:VCALENDAR