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BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240720T113000
DTEND;TZID=America/Halifax:20240720T121500
DTSTAMP:20260404T163915
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;VALUE=DATE:20240726
DTEND;VALUE=DATE:20240727
DTSTAMP:20260404T163915
CREATED:20240709T234340Z
LAST-MODIFIED:20240709T234340Z
UID:4773-1721952000-1722038399@canadianrdn.ca
SUMMARY:Cavernous Malformation Canada - 2024 Patient Conference
DESCRIPTION:This year our patient conference is ONE DAY ONLY\, with optional activities happening Saturday. \nKeynote by Dr. Brent Derry\, many expert presentations\, and lunch with the scientists\, as well as time to mingle with other patients.
URL:https://canadianrdn.ca/event/cavernous-malformation-canada-2024-patient-conference/
LOCATION:SickKids Hospital Peter Gilgan Centre for Research and Learning\, 170 Elizabeth St Toronto\, ON M5G 1E8\, Canada\, Toronto\, Ontario\, Canada
CATEGORIES:Caregiver,Conferences,Events,In Person,National,Patient Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/07/poster_board_2024_CCM_Patient_Conference__1_2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240731T120000
DTEND;TZID=America/Halifax:20240731T140000
DTSTAMP:20260404T163915
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=America/Chicago:20240811T110000
DTEND;TZID=America/Chicago:20240811T123000
DTSTAMP:20260404T163915
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/Chicago:20240815T150000
DTEND;TZID=America/Chicago:20240815T160000
DTSTAMP:20260404T163915
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/New_York:20240819T130000
DTEND;TZID=America/New_York:20240819T140000
DTSTAMP:20260404T163915
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/Denver:20240824T090000
DTEND;TZID=America/Denver:20240824T120000
DTSTAMP:20260404T163915
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=UTC:20240828T190000
DTEND;TZID=UTC:20240828T203000
DTSTAMP:20260404T163915
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=UTC:20240829T080000
DTEND;TZID=UTC:20240831T170000
DTSTAMP:20260404T163915
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=Europe/Helsinki:20240830T140000
DTEND;TZID=Europe/Helsinki:20240830T153000
DTSTAMP:20260404T163915
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=America/New_York:20240904T100000
DTEND;TZID=America/New_York:20240904T160000
DTSTAMP:20260404T163915
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=Asia/Tokyo:20240905T080000
DTEND;TZID=Asia/Tokyo:20240907T170000
DTSTAMP:20260404T163915
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/Denver:20240909T080000
DTEND;TZID=America/Denver:20240911T170000
DTSTAMP:20260404T163915
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=UTC:20240910T080000
DTEND;TZID=UTC:20240912T170000
DTSTAMP:20260404T163915
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/New_York:20240916T190000
DTEND;TZID=America/New_York:20240916T200000
DTSTAMP:20260404T163915
CREATED:20240604T000542Z
LAST-MODIFIED:20240604T000542Z
UID:4377-1726513200-1726516800@canadianrdn.ca
SUMMARY:CANPKU+ 2024 ANNUAL GENERAL MEETING
DESCRIPTION:Please note only those who are current members will have the availability to vote at the upcoming AGM. Please check your profile to see if your membership is current. \nNot current? Sign up to become a member or renew your membership at www.canpku.org/membership
URL:https://canadianrdn.ca/event/canpku-2024-annual-general-meeting/
CATEGORIES:Hybrid,National,Patient Focused,Policy
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240917
DTEND;VALUE=DATE:20240918
DTSTAMP:20260404T163915
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/Chicago:20240918T100000
DTEND;TZID=America/Chicago:20240918T110000
DTSTAMP:20260404T163915
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;TZID=Europe/Helsinki:20240918T140000
DTEND;TZID=Europe/Helsinki:20240918T153000
DTSTAMP:20260404T163915
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/Denver:20240919T100000
DTEND;TZID=America/Denver:20240919T113000
DTSTAMP:20260404T163915
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=America/New_York:20240919T120000
DTEND;TZID=America/New_York:20240919T130000
DTSTAMP:20260404T163915
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/Chicago:20240924T190000
DTEND;TZID=America/Chicago:20240924T200000
DTSTAMP:20260404T163915
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=UTC:20240925T080000
DTEND;TZID=UTC:20240928T170000
DTSTAMP:20260404T163915
CREATED:20240819T214651Z
LAST-MODIFIED:20240819T214651Z
UID:5216-1727251200-1727542800@canadianrdn.ca
SUMMARY:Canadian Association of Genetic Counsellors 2024 Annual Education Conference
DESCRIPTION:
URL:https://canadianrdn.ca/event/canadian-association-of-genetic-counsellors-2024-annual-education-conference/
CATEGORIES:Conferences,Healthcare,In Person,Patient Focused,Policy,Provincial,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Karachi:20240925T080000
DTEND;TZID=Asia/Karachi:20240928T203000
DTSTAMP:20260404T163915
CREATED:20240522T223719Z
LAST-MODIFIED:20240531T022742Z
UID:4141-1727251200-1727555400@canadianrdn.ca
SUMMARY:Week in RARE: RARE Advocacy Summit and Health Equity Forum
DESCRIPTION:Global Genes is on the move — Week in RARE is moving to Kansas City\, Missouri in 2024. Week in RARE combines the RARE Health Equity Forum and RARE Advocacy Summit\, in addition to the RARE Champions of Hope awards ceremony and annual membership meetings for Global Advocacy Alliance and RARE Corporate Alliance. This is a unique opportunity to gather and engage rare disease advocates and leaders in the same space for conversation. \nEach year\, Global Genes convenes one of the world’s largest gatherings of rare disease patients\, caregivers\, advocates\, healthcare professionals\, researchers\, partners\, and allies at the RARE Advocacy Summit to work together to build a path to hope. This is an unparalleled opportunity for advocates\, whether new or veteran\, to forge meaningful connections with others in the rare disease community for future collaboration. Sessions provide attendees\, with insights about the latest in rare disease innovations\, best practices for advocating on an individual and organizational level\, and actionable strategies they can take home and implement immediately to improve care and accelerate change. \nThe RARE Health Equity Forum is the first one-of-a-kind event focused on the intersection of rare disease and health equity with an agenda built around creating systemic and organizational change. The conference was developed to better understand the persistent gaps that exist in the rare disease community for underrepresented and/or marginalized patient populations\, including those who are still seeking a diagnosis or are unaffiliated with a disease-specific foundation. \nThis year\, the Summit will be held in Kansas City\, Missouri.
URL:https://canadianrdn.ca/event/week-in-rare-rare-advocacy-summit-and-health-equity-forum/
LOCATION:Kansas City\, Kansas City\, MO\, United States
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240925T150000
DTEND;TZID=America/Chicago:20240925T160000
DTSTAMP:20260404T163915
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:20240926T080000
DTEND;TZID=America/New_York:20240928T170000
DTSTAMP:20260404T163915
CREATED:20240801T212559Z
LAST-MODIFIED:20240801T212706Z
UID:4914-1727337600-1727542800@canadianrdn.ca
SUMMARY:2024 Global CMT Research Convention
DESCRIPTION:The CMT Research Foundation unites the voices of patients\, researchers\, pharma companies\, and regulatory agencies to develop treatments for CMT. \nThis event takes place over three days. Thursday and Friday are scientific meetings meant for researchers and scientists working in CMT. Saturday is primarily for patients and their families and caregivers\, providing a chance to interact with the research community that is working so hard on their behalf and to better understand the latest in research progress.
URL:https://canadianrdn.ca/event/2024-global-cmt-research-convention/
LOCATION:Cambridge\, Cambridge\, MA\, United States
CATEGORIES:Conferences,In Person,International,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240926T090000
DTEND;TZID=America/Chicago:20240926T103000
DTSTAMP:20260404T163915
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/New_York:20240929T100000
DTEND;TZID=America/New_York:20240929T150000
DTSTAMP:20260404T163915
CREATED:20240716T204443Z
LAST-MODIFIED:20240823T210828Z
UID:4816-1727604000-1727622000@canadianrdn.ca
SUMMARY:4th Regional Meeting on ITP - PDSA Canada
DESCRIPTION:On September 29\, 2024\, the 4th annual Canadian Regional Meeting will take place in Burlington\, ON\, for patients and families affected by ITP. The event will be held at the Courtyard Marriot. This meeting is a chance to meet other Canadian ITP patients and learn from Canadian ITP experts. If you are interested in registering for the event\, be on the lookout for updates on pdsa.org/Canada or reach out to Jennifer DiRaimo at jdiraimo@pdsa.org. \n  \n 
URL:https://canadianrdn.ca/event/4th-regional-meeting-on-itp-pdsa-canada/
LOCATION:The Courtyard Marriott Burlington\, Burlington\, Ontario\, Canada
CATEGORIES:Events,In Person,National,Patient Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/07/PDSA.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241008T080000
DTEND;TZID=America/Chicago:20241008T170000
DTSTAMP:20260404T163915
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=Europe/Helsinki:20241008T080000
DTEND;TZID=Europe/Helsinki:20241011T170000
DTSTAMP:20260404T163915
CREATED:20241002T203156Z
LAST-MODIFIED:20241002T203156Z
UID:5961-1728374400-1728666000@canadianrdn.ca
SUMMARY:🔵26èmes Journées Françaises de l’Epilepsie
DESCRIPTION:
URL:https://canadianrdn.ca/event/%f0%9f%94%b526emes-journees-francaises-de-lepilepsie/
CATEGORIES:Conferences,In Person,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241008T120000
DTEND;TZID=America/Chicago:20241008T130000
DTSTAMP:20260404T163915
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
END:VCALENDAR