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BEGIN:DAYLIGHT
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241008T080000
DTEND;TZID=America/Chicago:20241008T170000
DTSTAMP:20260403T141206
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=America/Denver:20240919T100000
DTEND;TZID=America/Denver:20240919T113000
DTSTAMP:20260403T141206
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/Chicago:20240918T100000
DTEND;TZID=America/Chicago:20240918T110000
DTSTAMP:20260403T141206
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=UTC:20240910T080000
DTEND;TZID=UTC:20240912T170000
DTSTAMP:20260403T141206
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=Europe/Helsinki:20240830T140000
DTEND;TZID=Europe/Helsinki:20240830T153000
DTSTAMP:20260403T141206
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:20260403T141206
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/New_York:20240819T130000
DTEND;TZID=America/New_York:20240819T140000
DTSTAMP:20260403T141206
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:20260403T141206
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:20240726T080000
DTEND;TZID=America/New_York:20240728T170000
DTSTAMP:20260403T141206
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:20260403T141206
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:20240717T080000
DTEND;TZID=America/Halifax:20240721T170000
DTSTAMP:20260403T141206
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;VALUE=DATE:20240711
DTEND;VALUE=DATE:20240714
DTSTAMP:20260403T141206
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;TZID=Europe/Helsinki:20240710T143000
DTEND;TZID=Europe/Helsinki:20240710T163000
DTSTAMP:20260403T141206
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:20240704T120000
DTEND;TZID=America/Halifax:20240704T133000
DTSTAMP:20260403T141206
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=America/New_York:20240621T150000
DTEND;TZID=America/New_York:20240621T160000
DTSTAMP:20260403T141206
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
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20240619T100000
DTEND;TZID=America/Denver:20240619T110000
DTSTAMP:20260403T141206
CREATED:20240603T235359Z
LAST-MODIFIED:20240603T235359Z
UID:4367-1718791200-1718794800@canadianrdn.ca
SUMMARY:Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood
DESCRIPTION:Join June’s Journal Club discussing “Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood”.  Ask Sadia Ahmed (sadahmed@ucalgary.ca)
URL:https://canadianrdn.ca/event/being-a-sibling-of-a-youth-with-a-neurodisability-a-qualitative-study-about-the-roles-and-responsibilities-during-the-transition-to-adulthood/
CATEGORIES:Caregiver,National,Patient Focused,Research Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20240607T080000
DTEND;TZID=America/Denver:20240608T170000
DTSTAMP:20260403T141206
CREATED:20240522T214313Z
LAST-MODIFIED:20240531T030952Z
UID:4117-1717747200-1717866000@canadianrdn.ca
SUMMARY:CMT Clinical Trial Readiness Summit
DESCRIPTION:As new clinical trials emerge for Charcot-Marie-Tooth disease (CMT)\, the importance of optimizing measures\, endpoints and the participant experience has never been more urgent! Hereditary Neuropathy Foundation (HNF) is committed to de-risking upcoming trials by bridging the gap between clinical trial study teams and patient perspectives and experiences. \nThis impact-driven summit is a chance for all patients\, caregivers\, clinicians\, industry\, and regulatory to connect with one another to exchange ideas\, and engage in open discussions about the obstacles we face in designing and conducting CMT clinical trials. As HNF focuses on accelerating access to critical research data and specimens\, this summit will also include on-site CMT Biobank collection.
URL:https://canadianrdn.ca/event/cmt-clinical-trial-readiness-summit/
LOCATION:Loews Coronado Bay Resort\, San Diego\, CA\, United States
CATEGORIES:Caregiver,Clinical Trials,Conferences,Healthcare,Hybrid,Industry,International,Patient Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20240607T080000
DTEND;TZID=America/Denver:20240608T170000
DTSTAMP:20260403T141206
CREATED:20240522T213736Z
LAST-MODIFIED:20240531T031132Z
UID:4114-1717747200-1717866000@canadianrdn.ca
SUMMARY:NORD Living Rare\, Living Stronger Patient and Family Forum 2024
DESCRIPTION:Th 2024 Living Rare\, Living Stronger NORD Patient and Family Forum will be held in Los Angeles\, CA at the Hilton Universal City on June 8. After six years\, they are excited to bring this program to the west coast! This event will bring together the incredible rare disease community for a day filled with learning\, networking\, and relationship building. The Living Rare Forum is an opportunity for people living with rare diseases and their families to come together\, often for the first time\, to gain practical knowledge on how to manage their health and live their best rare lives.
URL:https://canadianrdn.ca/event/nord-living-rare-living-stronger-patient-and-family-forum-2024/
LOCATION:Hilton Universal City\, Los Angeles\, CA\, United States
CATEGORIES:Caregiver,Healthcare,Hybrid,International,Patient Focused,Research Focused
ATTACH;FMTTYPE=image/jpeg:https://canadianrdn.ca/wp-content/uploads/2024/05/NRD-2308-LRLS-RIA-Save-the-Date-SM-Graphic_1-1024x1024-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240602T073000
DTEND;TZID=UTC:20240607T180000
DTSTAMP:20260403T141206
CREATED:20240529T004850Z
LAST-MODIFIED:20240531T031258Z
UID:4246-1717313400-1717783200@canadianrdn.ca
SUMMARY:Perinatal and Child Health Research Annual Meetings
DESCRIPTION:The realm of perinatal child health research is undergoing a rapid transformation. To enhance the well-being of our children and families\, it is imperative to foster collaborative research endeavors\, facilitate data sharing\, provide training\, and encourage networking among researchers and institutions. Consequently\, nine networks have united their annual meetings to facilitate connections and eliminate obstacles to top-tier health research and training. Our objective is to unite the Canadian perinatal and child health research community in a singular location—a historic first—where innovative ideas can flourish and a collaborative environment can be established.
URL:https://canadianrdn.ca/event/perinatal-and-child-health-research-annual-meetings/
LOCATION:Sheraton Wall Centre\, Vancouver\, British Columbia\, Canada
CATEGORIES:Caregiver,Clinical Trials,Conferences,Healthcare,In Person,National,Patient Focused,Policy,Research Focused
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240523T080000
DTEND;TZID=America/New_York:20240526T170000
DTSTAMP:20260403T141206
CREATED:20240523T012330Z
LAST-MODIFIED:20240531T031934Z
UID:4175-1716451200-1716742800@canadianrdn.ca
SUMMARY:CureDuchenne FUTURES National Conference
DESCRIPTION:The CureDuchenne FUTURES National Conference is an annual event focused on bringing education\, connection\, and hope to the entire Duchenne community.
URL:https://canadianrdn.ca/event/cureduchenne-futures-national-conference/
LOCATION:JW Marriott Orlando\, Orlando\, FL\, United States
CATEGORIES:Caregiver,Conferences,Healthcare,In Person,International,Patient Focused,Research Focused
END:VEVENT
END:VCALENDAR