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BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
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DTSTART:20230326T010000
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BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20241017T080000
DTEND;TZID=Europe/Helsinki:20241019T170000
DTSTAMP:20260410T040531
CREATED:20241002T203519Z
LAST-MODIFIED:20241002T203519Z
UID:5967-1729152000-1729357200@canadianrdn.ca
SUMMARY:DIFFERENT FACES OF RARE AND COMPLEX EPILEPSIES
DESCRIPTION:
URL:https://canadianrdn.ca/event/different-faces-of-rare-and-complex-epilepsies/
CATEGORIES:Conferences,In Person,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20241017T080000
DTEND;TZID=Europe/Helsinki:20241018T170000
DTSTAMP:20260410T040531
CREATED:20241002T203337Z
LAST-MODIFIED:20241002T203337Z
UID:5964-1729152000-1729270800@canadianrdn.ca
SUMMARY:EPNS Research Meeting 2024
DESCRIPTION:The EPNS has been organising Research Meetings since 2008. With an aim to enhance research in Paediatric Neurology\, the meeting brings together leaders in the field\, active researchers and young fellows who are interested to join or to set up research projects. It is a forum for researchers in Paediatric Neurology\, where they present their work\, ideas\, results\, creating the possibility for good interaction between researchers and premises for networking\, future collaborative research in Europe and beyond. Experienced professionals and young researchers get together\, in an environment where interactive\, vivid discussions can take place around the presented topics.
URL:https://canadianrdn.ca/event/epns-research-meeting-2024/
CATEGORIES:Conferences,In Person,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20241016T080000
DTEND;TZID=Europe/Paris:20241019T170000
DTSTAMP:20260410T040531
CREATED:20240801T205116Z
LAST-MODIFIED:20240801T205116Z
UID:4907-1729065600-1729357200@canadianrdn.ca
SUMMARY:21st Biennial ESID Meeting
DESCRIPTION:The ESID 2024 meeting in Marseille will cover the latest most exciting discoveries in basic and clinical science covering our expanding field\, bringing together internationally renowned scientists and clinicians to present and discuss major and exciting developments in diagnosis\, clinical management\, genetics\, immunobiology of inborn errors of immunity\, through keynote lectures\, symposia\, educational workshops\, interactive sessions\, poster presentations\, and meet-the-expert sessions.
URL:https://canadianrdn.ca/event/21st-biennial-esid-meeting/
LOCATION:france\, Marseille\, France
CATEGORIES:Conferences,In Person,International,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241009
DTEND;VALUE=DATE:20241011
DTSTAMP:20260410T040531
CREATED:20240702T205524Z
LAST-MODIFIED:20240702T205524Z
UID:4719-1728432000-1728604799@canadianrdn.ca
SUMMARY:International Conference on Newborn Screening 2024
DESCRIPTION:The 2024 meeting of the International Consortium on Newborn Sequencing (ICoNS) will be held in New York City\, USA on October 9 – 10\, 2024. \nICoNS is the premier event for connecting with top experts and gaining insights into the frontier of newborn sequencing as screening for ushering in the era of preventive medicine.
URL:https://canadianrdn.ca/event/international-conference-on-newborn-screening-2024/
CATEGORIES:Conferences,Events,Healthcare,In Person,International,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/07/logo-wht.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Helsinki:20241008T080000
DTEND;TZID=Europe/Helsinki:20241011T170000
DTSTAMP:20260410T040531
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=UTC:20240929T080000
DTEND;TZID=UTC:20241001T170000
DTSTAMP:20260410T040531
CREATED:20240918T211234Z
LAST-MODIFIED:20240918T211234Z
UID:5877-1727596800-1727802000@canadianrdn.ca
SUMMARY:4th International Symposium on Arthrogryposis
DESCRIPTION:The International Symposium on Arthrogryposis provides a platform for learning and exchanging on the clinical management and research in Arthrogryposis Multiplex Congenita (AMC) in the areas of genetics\, orthopedics\, and rehabilitation. Multisite collaborations are key to advance research initiatives and standardize practice across centers.
URL:https://canadianrdn.ca/event/4th-international-symposium-on-arthrogryposis/
CATEGORIES:Conferences,Healthcare,In Person,National,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/09/451645084_18448036270019107_2342645705354448652_n.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240926T080000
DTEND;TZID=America/New_York:20240928T170000
DTSTAMP:20260410T040531
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/Halifax:20240926T080000
DTEND;TZID=America/Halifax:20240928T170000
DTSTAMP:20260410T040531
CREATED:20240523T005941Z
LAST-MODIFIED:20240531T022557Z
UID:4169-1727337600-1727542800@canadianrdn.ca
SUMMARY:North American Cystic Fibrosis Conference
DESCRIPTION:NACFC provides a collaborative and educational forum for all CF professionals. The educational elements of the meeting program are targeted to physicians\, nurses\, research scientists\, respiratory therapists\, physical therapists\, nutritionists\, social workers\, and pharmacists. \nThis annual meeting brings together scientists\, clinicians\, and caregivers from around the world to discuss and share ideas on the latest advances in CF research\, care\, and drug development and to exchange ideas about ways to improve the health and quality of life for people with CF.
URL:https://canadianrdn.ca/event/north-american-cystic-fibrosis-conference/
LOCATION:Boston Convention and Exhibition Center\, Boston\, MA\, United States
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Karachi:20240925T080000
DTEND;TZID=Asia/Karachi:20240928T203000
DTSTAMP:20260410T040531
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=UTC:20240925T080000
DTEND;TZID=UTC:20240928T170000
DTSTAMP:20260410T040531
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;VALUE=DATE:20240920
DTEND;VALUE=DATE:20240923
DTSTAMP:20260410T040531
CREATED:20240716T210445Z
LAST-MODIFIED:20240717T005444Z
UID:4820-1726790400-1727049599@canadianrdn.ca
SUMMARY:CHAEN / International Guideline Conference
DESCRIPTION:The Canadian Hereditary Angioedema Network (CHAEN) is an organization of physicians who treat and/or are interested in Hereditary Angioedema. CHAEN is incorporated under the Canada Not-For-Profit Corporations Act. \nCHAEN unites physicians committed to ensuring all HAE patients in Canada have access to excellent care that reflects current management and treatment guidelines\, and works to promote research and education.
URL:https://canadianrdn.ca/event/chaen-international-guideline-conference/
LOCATION:Hilton Hotel Toronto\, Toronto\, Ontario\, Canada
CATEGORIES:Conferences,Events,Healthcare,In Person,National,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240917
DTEND;VALUE=DATE:20240918
DTSTAMP:20260410T040531
CREATED:20240827T013421Z
LAST-MODIFIED:20240827T013421Z
UID:5413-1726531200-1726617599@canadianrdn.ca
SUMMARY:EMPOWER & INSPIRE 3RD ANNUAL LEIGH SYNDROME SYMPOSIUM
DESCRIPTION:Empower & Inspire: Understanding and Accelerating Research for Leigh Syndrome\nTuesday\, September 17\, 2024 \nBrought to you by: \n​Cure Mito Foundation & integrative Cardiovascular Metabolism and Pathophysiology Laboratory (iCaMP) at Boston University \nFor details please visit curemito.org/conference \n 
URL:https://canadianrdn.ca/event/empower-inspire-3rd-annual-leigh-syndrome-symposium/
CATEGORIES:Conferences,Healthcare,Industry,Patient Focused,Research Focused,Virtual
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/Cure-Mito.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20240916T080000
DTEND;TZID=Australia/Melbourne:20240920T170000
DTSTAMP:20260410T040531
CREATED:20240522T222536Z
LAST-MODIFIED:20240531T022852Z
UID:4138-1726473600-1726851600@canadianrdn.ca
SUMMARY:Global Alliance for Genomics and Health - 12th Plenary
DESCRIPTION:GA4GH 12th Plenary brings together organisations and initiatives from the genomics and health community for keynotes\, talks\, and workshops. The conference will focus on genomic and clinical data sharing issues that pervade diverse industries\, disciplines\, and communities.
URL:https://canadianrdn.ca/event/global-alliance-for-genomics-and-health-12th-plenary/
LOCATION:Park Hyatt Melbourne\, Melbourne\, Australia
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Paris:20240911T080000
DTEND;TZID=Europe/Paris:20240914T170000
DTSTAMP:20260410T040531
CREATED:20240801T204730Z
LAST-MODIFIED:20240801T204730Z
UID:4902-1726041600-1726333200@canadianrdn.ca
SUMMARY:31st European Paediatric Rheumatology
DESCRIPTION:As always at PReS meetings\, the invited faculty represents internationally renowned clinicians and scientists who will present and discuss significant and exciting developments in pathophysiology\, diagnostics\, and clinical management of pediatric rheumatology. In the program they will recognize some of the favorites over the year: Grand debates and Thieves market. Added to that many outstanding presentations with varying themes. Also\, of course\, as tradition is\, they will find Young Investigators Meeting and EULAR Pediatric Ultrasound Course.
URL:https://canadianrdn.ca/event/31st-european-paediatric-rheumatology/
LOCATION:Sweden\, Gothenburg\, Sweden
CATEGORIES:Conferences,In Person,International,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240910T080000
DTEND;TZID=UTC:20240912T170000
DTSTAMP:20260410T040531
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:20240909T080000
DTEND;TZID=America/Denver:20240911T170000
DTSTAMP:20260410T040531
CREATED:20240809T210908Z
LAST-MODIFIED:20240809T210938Z
UID:5091-1725868800-1726074000@canadianrdn.ca
SUMMARY:C-Path 2024 Global Impact Conference
DESCRIPTION:Attendees of the 3-day conference\, including patients\, providers\, researchers\, clinicians\, biopharmaceutical companies\, regulatory reviewers and scientists\, will leave with knowledge of: \n\nAccelerating drug development across neurology\, rare diseases\, pediatrics\, and beyond.\nIntegrating insights across therapeutic areas to advance the process for novel treatments and cures.\nThe power of every precious data point in rare and orphan diseases.\nNavigating novel therapies with novel evidence sources.\nInnovative methods and approaches.\nThe value and impact that C-Path partnerships have on accelerating drug development.
URL:https://canadianrdn.ca/event/c-path-2024-global-impact-conference/
CATEGORIES:Clinical Trials,Conferences,Healthcare,In Person,Industry,International,Patient Focused,Policy,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/08/C-PATH1.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Tokyo:20240905T080000
DTEND;TZID=Asia/Tokyo:20240907T170000
DTSTAMP:20260410T040531
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/Halifax:20240904T080000
DTEND;TZID=America/Halifax:20240906T170000
DTSTAMP:20260410T040531
CREATED:20240522T221425Z
LAST-MODIFIED:20240531T023310Z
UID:4132-1725436800-1725642000@canadianrdn.ca
SUMMARY:Canada's Drug Agency 2024 Symposium: From Disruption to Opportunity: Embracing Change in Health Care
DESCRIPTION:Symposium 2024 will delve into the strategies\, technologies\, and best practices that can help HTA providers and health care decision-makers navigate disruption and unlock new opportunities\, including appropriate use of health technology. \nDiscover how embracing change can lead to innovative HTA methods\, greater equity\, enhanced patient care\, and more effective use of data and analytics. Network with Canadian and international experts and forge valuable connections that can drive future collaborations and partnerships.
URL:https://canadianrdn.ca/event/canadas-drug-agency-2024-symposium-from-disruption-to-opportunity-embracing-change-in-health-care/
LOCATION:Shaw Centre\, Ottawa\, Ontario\, Canada
CATEGORIES:Conferences,Hybrid,Industry,National,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240830T103000
DTEND;TZID=UTC:20240830T113000
DTSTAMP:20260410T040531
CREATED:20240618T011800Z
LAST-MODIFIED:20240618T011800Z
UID:4456-1725013800-1725017400@canadianrdn.ca
SUMMARY:Canadian Scleroderma Research Group - Navigating Systemic Sclerosis Waters
DESCRIPTION:The CME (Continuing Medical Education) Session hosted at the National Scleroderma Conference is for family practitioners\, ER physicians\, critical care physicians\, internists\, rheumatologists\, nephrologists\, cardiologists\, respirologists\, nurses\, physiotherapists\, occupational therapists\, respiratory therapists\, pharmacists\, and students.
URL:https://canadianrdn.ca/event/canadian-scleroderma-research-group-navigating-systemic-sclerosis-waters/
CATEGORIES:Conferences,Events,Healthcare,Hybrid,National
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240829T080000
DTEND;TZID=UTC:20240831T170000
DTSTAMP:20260410T040531
CREATED:20240523T212750Z
LAST-MODIFIED:20240531T023825Z
UID:4213-1724918400-1725123600@canadianrdn.ca
SUMMARY:21st BI-ANNUAL NATIONAL SCLERODERMA CONFERENCE
DESCRIPTION:Held in beautiful St. John’s\, NL\, the 21st Bi-Annual National Scleroderma Conference offers an information-rich opportunity for people living with scleroderma\, their caregivers\, family members\, friends\, and medical professionals.  \n​Research updates\, panel discussions\, keynotes\, workshops\, and other educational sessions are led by leading scleroderma researchers\, healthcare professionals and other industry leading professionals. Whether you are newly diagnosed or have had scleroderma for many years\, the National Conference is a great way to learn about the disease and become connected with others that are dealing with scleroderma.
URL:https://canadianrdn.ca/event/21st-bi-annual-national-scleroderma-conference/
LOCATION:St John’s Conference Centre\, St John's\, Newfoundland\, Canada
CATEGORIES:Conferences,Healthcare,In Person,National,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240726T080000
DTEND;TZID=America/New_York:20240728T170000
DTSTAMP:20260410T040531
CREATED:20240529T195854Z
LAST-MODIFIED:20240531T023953Z
UID:4277-1721980800-1722186000@canadianrdn.ca
SUMMARY:Platelet Disorder Support Association-ITP Conference 2024
DESCRIPTION:This year\, PDSA will host its 24th annual update on immune thrombocytopenia (ITP) for patients\, caregivers and the medical community in San Antonio\, Texas July 26-28. This year’s patient conference will take place at The Westin Riverwalk in downtown San Antonio. Each year the ITP conference provides opportunities to hear the latest information about ITP\, meet others who are coping and living with ITP and receive answers to your medical questions. You will also have the opportunity to ask your questions to PDSA’s Medical Advisors\, who are some of the most experienced ITP doctors in the world. You don’t want to miss out on this tremendous opportunity to hear and talk with these world-renowned experts. \nIn addition to the educational program and social events\, the conference will feature several small group sessions to give you an opportunity to get to know other patients and caregivers in an intimate environment. They will also offer programs for children at our Kids Kamp for children ages 5-12. Like conferences in the past\, this year’s conference will provide a separate track for teens and young adults.
URL:https://canadianrdn.ca/event/platelet-disorder-support-association-itp-conference-2024/
LOCATION:The Westin Riverwalk\, San Antonio\, TX\, United States
CATEGORIES:Caregiver,Conferences,Healthcare,In Person,International,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240726
DTEND;VALUE=DATE:20240727
DTSTAMP:20260410T040531
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240720T113000
DTEND;TZID=America/Halifax:20240720T121500
DTSTAMP:20260410T040531
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:20240717T080000
DTEND;TZID=America/Halifax:20240721T170000
DTSTAMP:20260410T040531
CREATED:20240523T211126Z
LAST-MODIFIED:20240531T024910Z
UID:4207-1721203200-1721581200@canadianrdn.ca
SUMMARY:2024 Global Learning Conference
DESCRIPTION:The Ehlers-Danlos Society is delighted to welcome you to register for our 2024 Global Learning Conference in Philadelphia\, Pennsylvania\, USA! Ehlers-Danlos Society will be hosting this exciting hybrid event\, both in-person and virtually. Join individuals and families with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) for up to five days of learning\, collaboration\, and networking. \nThe conference theme is “EDS and HSD: From Head to Toe” and will feature presentations\, case studies\, and panel discussions led by experts on the management of symptoms and comorbidities from head to toe in EDS and HSD. The event is suitable for community members and their friends and families\, as well as healthcare professionals.
URL:https://canadianrdn.ca/event/2024-global-learning-conference/
LOCATION:Philadelphia Marriott Downtown\, Philadelphia\, PA\, United States
CATEGORIES:Caregiver,Conferences,Healthcare,Hybrid,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20240716T083000
DTEND;TZID=America/Halifax:20240716T173000
DTSTAMP:20260410T040531
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;VALUE=DATE:20240711
DTEND;VALUE=DATE:20240714
DTSTAMP:20260410T040531
CREATED:20240613T210500Z
LAST-MODIFIED:20240613T210500Z
UID:4439-1720656000-1720915199@canadianrdn.ca
SUMMARY:PRISMS Leads the Way To Support Those Living with Smith-Magenis Syndrome at 12th International Conference
DESCRIPTION:PRISMS 12th International Conference is the largest conference specifically focused on Smith-\nMagenis Syndrome (SMS) in the world. The conference goal is to educate and share information about SMS while providing opportunities for engagement and community amongst SMS families and professionals. This educational and family support multi-day event is a critical program for the SMS community. \nThe conference theme is “Leading the Way Together” and will share the most recent advances in diagnosis\, treatments\, and management of SMS throughout the lifespan. \nRegistration for PRISMS’ 12th International Conference is now open. The conference will be held at the Hyatt Regency in Dallas\, TX July 11-14\, 2024.
URL:https://canadianrdn.ca/event/prisms-leads-the-way-to-support-those-living-with-smith-magenis-syndrome-at-12th-international-conference/
LOCATION:Hyatt Regency Dallas\, Dallas\, TX\, United States
CATEGORIES:Caregiver,Conferences,Events,In Person,International,Patient Focused,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240711
DTEND;VALUE=DATE:20240712
DTSTAMP:20260410T040531
CREATED:20240516T210656Z
LAST-MODIFIED:20240531T025304Z
UID:4104-1720656000-1720742399@canadianrdn.ca
SUMMARY:North America Rare Diseases Summit 2024
DESCRIPTION:This event brings together leading researchers\, healthcare professionals\, patient advocates\, policymakers\, industry experts\, and rare disease patients and families. The summit emphasizes the power of collaboration and solidarity in facing rare diseases.
URL:https://canadianrdn.ca/event/north-america-rare-diseases-summit-2024/
LOCATION:Radisson Blu Aqua Hotel\, Chicago\, IL\, United States
CATEGORIES:Conferences,In Person,Industry,International,Policy,Research Focused
ATTACH;FMTTYPE=image/png:https://canadianrdn.ca/wp-content/uploads/2024/05/https___a8320c040ef1cfa0d3d4fe4c8801b0ae.cdn_.bubble.io_f1708629607077x199225686610369900_Chicago20july20.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240627
DTEND;VALUE=DATE:20240630
DTSTAMP:20260410T040531
CREATED:20240612T221549Z
LAST-MODIFIED:20240613T000220Z
UID:4421-1719446400-1719705599@canadianrdn.ca
SUMMARY:IFPA Conference the 7th World Psoriasis & Psoriatic Arthritis Conference
DESCRIPTION:Established in 2006\, the IFPA Conference (also known as the World Psoriasis & Psoriatic Arthritis Conference) provides a unique\, cross-specialty platform. Medical and health professionals present frontline clinical research in dermatology\, rheumatology and beyond. Delegates can explore psoriatic disease from different perspectives by networking with patients and industry representatives in attendance. The IFPA conference calls for breakthroughs in research that will improve the understanding of all aspects of psoriatic disease. \nThe next conference will be held 27-29 June\, 2024 in Stockholm\, Sweden. \nThe theme of this Conference is: Uncovering the broad spectrum of psoriatic disease
URL:https://canadianrdn.ca/event/ifpa-conference-the-7th-world-psoriasis-psoriatic-arthritis-conference/
LOCATION:Stockholm Waterfront Congress Centre\, Nils Ericsons Plan 4\, Stockholm\, Sweden
CATEGORIES:Conferences,Events,In Person,Industry,International,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Stockholm:20240626T170000
DTEND;TZID=Europe/Stockholm:20240628T180000
DTSTAMP:20260410T040531
CREATED:20240522T220746Z
LAST-MODIFIED:20240531T025542Z
UID:4129-1719421200-1719597600@canadianrdn.ca
SUMMARY:6th Fibrodysplasia Ossificans Progressiva (FOP) Drug Development Forum
DESCRIPTION:The Drug Development Forum (DDF) brings together biotech and pharmaceutical companies\, academic researchers and clinician scientists to collaborate and advance Fibrodysplasia Ossificans Progressiva (FOP) research. It’s an opportunity to discuss emerging FOP data and highlight gaps in our understanding of FOP disease pathogenesis that could offer new therapeutic options. The June 2024 event offers both in-person and virtual attendance options. Due to the content being shared\, only FOP family members who are invited to speak or are members of the International Presidents’ Council or IFOPA’s Research Committee may register. \nWith the first-ever treatment for FOP approved in select countries and five active FOP clinical trials\, there is still an abundance of preclinical research with the potential to be translated into safe and effective new medicines. Molecules advancing drug discovery\, advanced therapeutic modalities and new technologies must continually be explored for their potential to treat understudied signs and symptoms of FOP.
URL:https://canadianrdn.ca/event/6th-fibrodysplasia-ossificans-progressiva-fop-drug-development-forum/
LOCATION:Elite Hotel Tower Marina\, Stockholm\, Sweden
CATEGORIES:Clinical Trials,Conferences,Healthcare,Hybrid,Industry,International,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240626T080000
DTEND;TZID=UTC:20240629T180000
DTSTAMP:20260410T040531
CREATED:20240514T211801Z
LAST-MODIFIED:20240531T025704Z
UID:4002-1719388800-1719684000@canadianrdn.ca
SUMMARY:MitoMed Conference 2024
DESCRIPTION:Each year\, the United Mitochondrial Disease Foundation (UMDF)’s Mitochondrial Medicine Conference brings together the best minds in mitochondrial medicine and gives patients and families the opportunity to meet some of the top clinical mitochondrial specialists from around the world. With over 700 attendees representing almost every state in the U.S. and more than 15 different countries\, the Conference is recognized as the world’s preeminent event for mitochondrial disease.
URL:https://canadianrdn.ca/event/mitomed-conference-2024/
LOCATION:Hilton Cleveland Downtown\, Cleveland\, OH\, United States
CATEGORIES:Conferences,In Person,Industry,International,Patient Focused,Research Focused
END:VEVENT
END:VCALENDAR