BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Canadian Rare Disease Network - ECPv6.15.20//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/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: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:UTC
BEGIN:STANDARD
TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20230101T000000
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: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/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:VEVENT
DTSTART;TZID=America/Chicago:20240815T150000
DTEND;TZID=America/Chicago:20240815T160000
DTSTAMP:20260603T062721
CREATED:20240807T015544Z
LAST-MODIFIED:20240807T015811Z
UID:4949-1723734000-1723737600@canadianrdn.ca
SUMMARY:Showing Up 101
DESCRIPTION:“Showing Up 101” is a gently guided\, grief informed experience intended to share a language of loss\, introduce frameworks for grieving and coping\, and promote openness and connection for moving with loss. The content is grounded in bereavement-science\, lived experience\, and movement-based practices for regulating ourselves. In this 60 minute session\, participants will feel equipped and empowered to integrate loss language in their lives\, to better communicate how they are feeling to themselves and others\, and to understand the power of community for sustaining the hardest\, most painful losses. The session is led by Myra Sack\, a bereaved mother who is also a Compassionate Bereavement Care Provider\, Founder of E-Motion\, Inc.\, and the author of Fifty-Seven Fridays: Losing Our Daughter\, Finding Our Way.
URL:https://canadianrdn.ca/event/showing-up-101/
CATEGORIES:Caregiver,Patient Focused,Virtual,Webinars
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240726T080000
DTEND;TZID=America/New_York:20240728T170000
DTSTAMP:20260603T062721
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:20260603T062721
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:20240717T080000
DTEND;TZID=America/Halifax:20240721T170000
DTSTAMP:20260603T062721
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:20260603T062721
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:20260603T062721
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:20260603T062721
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:20260603T062721
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:20260603T062721
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:20260603T062721
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:20260603T062721
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240602T073000
DTEND;TZID=UTC:20240607T180000
DTSTAMP:20260603T062721
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:20260603T062721
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