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X-WR-CALDESC:Events for Medics For Rare Disease
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DTSTART;TZID=Europe/London:20220201T183000
DTEND;TZID=Europe/London:20220201T200000
DTSTAMP:20260409T063139
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SUMMARY:Lessons learned from the COVID-19 pandemic: Diagnostic delay in rare disease
DESCRIPTION:This time last year it became clear to the rare disease community that the COVID-19 pandemic was having a disproportionate and often devastating effect on all aspects of the lives of those living with rare conditions.\nTo remediate this\, a large group of UK-based and cross-sector stakeholders\, known as ARDEnt\, assembled to ensure the capture and analysis of what was truly happening to the fragile rare disease infrastructure.\nJointly organised with ARDEnt\, this webinar will examine how the diagnostic process in rare diseases was affected by the response to the COVID-19 pandemic. \nThe journey to a rare diagnosis is already recognised as a long and arduous process and has been coined the ‘Diagnostic Odyssey’. The ARDEnt team found that diagnostic delay has been further exacerbated during the pandemic and the consequences of this will be felt for years to come as the population of people living with an undiagnosed rare disease will have grown bigger in 2020.  \nRead Making The Unseen Seen: Rare disease and lessons learned from the pandemic report to find out more on this episode\, the series\, and the ARDEnt Team’s research. \nCPD learning applied. \nThis webinar is part of the ‘Lessons learned from the COVID-19 pandemic’ series\, a series that will cover all themes outlined in the Making The Unseen Seen report\, from diagnostic delay in episode 1\, to health and social care in episode 2\, clinical trials and drug development in episode 3\, and concluding with the UK Rare Diseases Framework and action plans in episode 4. \nThis webinar is available for on-demand viewing. The webinar recording will be available for registered delegates up to 30 days after the live webinar broadcast via Zoom. The link will be sent 24 hours after the webinar takes place. 
URL:https://www.m4rd.org/event/lessons-learned-from-the-covid-19-pandemic-diagnostic-delay-in-rare-disease/
LOCATION:ONLINE
CATEGORIES:COVID-19,Rare Diseases,Royal Society of Medicine,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/10/Untitled-design-26.png
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220208T183000
DTEND;TZID=Europe/London:20220208T200000
DTSTAMP:20260409T063139
CREATED:20211006T143558Z
LAST-MODIFIED:20211006T143558Z
UID:8478-1644345000-1644350400@www.m4rd.org
SUMMARY:Lessons learned from the COVID-19 pandemic: Rare disease health and social care coordination
DESCRIPTION:During times of global disruption\, it is often those who are already disadvantaged that are disproportionately affected. Theme 2 of the ARDEnt report highlights this impact on those with rare conditions.\nJointly organised with ARDEnt\, this webinar will examine how the reduction to healthcare\, social services and SEND (special educational needs and disabilities) education has had a devastating impact that will be felt long after COVID-19 restrictions are lifted.\nAs the world begins to find its new normal we must ensure we are “making the unseen seen”. \nRead Making The Unseen Seen: Rare disease and lessons learned from the pandemic report to find out more on this episode\, the series\, and the ARDEnt Team’s research. \nCPD learning applied. \nThis webinar is part of the ‘Lessons learned from the COVID-19 pandemic’ series\, a series that will cover all themes outlined in the Making The Unseen Seen report\, from diagnostic delay in episode 1\, to health and social care in episode 2\, clinical trials and drug development in episode 3\, and concluding with the UK Rare Diseases Framework and action plans in episode 4. \nThis webinar is available for on-demand viewing. The webinar recording will be available for registered delegates up to 30 days after the live webinar broadcast via Zoom. The link will be sent 24 hours after the webinar takes place. 
URL:https://www.m4rd.org/event/lessons-learned-from-the-covid-19-pandemic-rare-disease-health-and-social-care-coordination/
LOCATION:ONLINE
CATEGORIES:COVID-19,Rare Diseases,Royal Society of Medicine,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/10/Untitled-design-26.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220215T180000
DTEND;TZID=Europe/London:20220215T203000
DTSTAMP:20260409T063139
CREATED:20211006T143455Z
LAST-MODIFIED:20211006T143455Z
UID:8480-1644948000-1644957000@www.m4rd.org
SUMMARY:Lessons learned from the COVID-19 pandemic: Clinical trials and drug development in rare disease
DESCRIPTION:This episode refers to theme 3 in the Making The Unseen Seen: Rare disease and lessons learned from the pandemic report and will discuss how safety considerations\, travel restrictions\, shielding\, trial-sites being repurposed to COVID-19 wards\, research staff either being called to the front- line or called to replace others who were\, have compounded the already fragile world of clinical development for rare diseases.\nRead Making The Unseen Seen: Rare disease and lessons learned from the pandemic report to find out more on this episode\, the series\, and the ARDEnt Team’s research. \nCPD learning applied. \nThis webinar is part of the ‘Lessons learned from the COVID-19 pandemic’ series\, a series that will cover all themes outlined in the Making The Unseen Seen report\, from diagnostic delay in episode 1 to health and social care in episode 2\, clinical trials and drug development in episode 3\, and concluding with the UK Rare Diseases Framework and action plans in episode 4. \nThis webinar is available for on-demand viewing. The webinar recording will be available for registered delegates up to 30 days after the live webinar broadcast via Zoom. The link will be sent 24 hours after the webinar takes place.
URL:https://www.m4rd.org/event/lessons-learned-from-the-covid-19-pandemic-clinical-trials-and-drug-development-in-rare-disease/
LOCATION:ONLINE
CATEGORIES:COVID-19,Rare Diseases,Royal Society of Medicine,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/10/Untitled-design-26.png
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220222T180000
DTEND;TZID=Europe/London:20220222T203000
DTSTAMP:20260409T063139
CREATED:20211006T143422Z
LAST-MODIFIED:20211006T143422Z
UID:8482-1645552800-1645561800@www.m4rd.org
SUMMARY:Lessons learned from the COVID-19 pandemic: Looking to the future with The UK Rare Diseases Framework
DESCRIPTION:Jointly organised with ARDEnt\, this webinar will discuss the recommendations the ARDEnt team is using to help inform how the UK is going to deliver its objectives set out in the UK Rare Diseases Framework\, published in January 2021.\nThe webinar panel includes members of ARDEnt and those responsible for overseeing the impact of the Framework in the UK.\nRead about these recommendations in the Making The Unseen Seen: Rare disease and lessons learned from the pandemic report to find out more on this episode\, the series\, and the ARDEnt Team’s research. \nCPD learning applied. \nThis webinar is part of the ‘Lessons learned from the COVID-19 pandemic’ series\, a series that will cover all themes outlined in the Making The Unseen Seen report\, from diagnostic delay in episode 1 to health and social care in episode 2\, clinical trials and drug development in episode 3\, and concluding with the UK Rare Diseases Framework and action plans in episode 4. \nThis webinar is available for on-demand viewing. The webinar recording will be available for registered delegates up to 30 days after the live webinar broadcast via Zoom. The link will be sent 24 hours after the webinar takes place. 
URL:https://www.m4rd.org/event/lessons-learned-from-the-covid-19-pandemic-looking-to-the-future-with-the-uk-rare-diseases-framework/
LOCATION:ONLINE
CATEGORIES:COVID-19,Rare Diseases,Royal Society of Medicine,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/10/Untitled-design-26.png
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