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X-WR-CALNAME:Medics For Rare Disease
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DTSTART;TZID=Europe/London:20220201T183000
DTEND;TZID=Europe/London:20220201T200000
DTSTAMP:20260404T015944
CREATED:20211006T143630Z
LAST-MODIFIED:20211006T143630Z
UID:8475-1643740200-1643745600@www.m4rd.org
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220208T183000
DTEND;TZID=Europe/London:20220208T200000
DTSTAMP:20260404T015944
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:20220209T180000
DTEND;TZID=Europe/London:20220209T200000
DTSTAMP:20260404T015944
CREATED:20210820T112939Z
LAST-MODIFIED:20210923T113010Z
UID:8341-1644429600-1644436800@www.m4rd.org
SUMMARY:The Unusual Suspects: rare disease in everyday medicine
DESCRIPTION:The Unusual Suspects: Rare disease in everyday medicine is returning to The Royal Society of Medicine on 9th February!\nThe M4RD Annual Symposium has been a popular event in the rare disease calendar for many years\, allowing healthcare professionals at all levels\, trainees and students to come together to learn more about the importance of understanding rare diseases as a whole\, with a large focus on improving awareness and management. \nFollowing the success of last year’s online event\, we will be live streaming from 1 Wimpole Street. \nThis is the only medical meeting of its type in the UK that brings together stakeholders from across all sectors and rare diseases in order to teach those who don’t yet know much about rare disease.We will be hearing from patients\, parents\, advocates and clinicians. \nBOOK NOW
URL:https://www.m4rd.org/event/the-unusual-suspects-rare-disease-in-everyday-medicine/
LOCATION:LIVE STREAM
CATEGORIES:Conference,Networking,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/08/M4RD2020-114-scaled.jpg
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220215T180000
DTEND;TZID=Europe/London:20220215T203000
DTSTAMP:20260404T015944
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220222T180000
DTEND;TZID=Europe/London:20220222T203000
DTSTAMP:20260404T015944
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220228T183000
DTEND;TZID=Europe/London:20220228T200000
DTSTAMP:20260404T015944
CREATED:20220201T112556Z
LAST-MODIFIED:20220201T112556Z
UID:9074-1646073000-1646078400@www.m4rd.org
SUMMARY:Beyond the Student Voice Prize: Continuing your involvement in rare disease
DESCRIPTION:Learn how you can further your interest and get more involved in the world of rare diseases to benefit both yourself and the rare community\n\n\n\n\n\n\n\nThe Student Voice Prize is delighted to invite you to our virtual rare disease day event ‘Beyond the Student Voice Prize;’ an opportunity to connect with peers and patient group leaders to learn more about the rare community and how you can get further involved.  \nThe event will be an informal opportunity for you to meet new people and share your experiences of the rare disease community and entering the Student Voice Prize. You’ll also learn how you can build on your current knowledge to drive your personal and professional development whilst helping those in the rare disease community. \nWho is this event for?  \n\nPrevious entrants of the Student Voice Prize\nMedical students interested in learning more about rare conditions and getting involved in the community\nRare disease patient group leaders who have been involved in the Student Voice Prize in the past\nRare Disease patient group leaders who haven’t been involved in the Student Voice Prize in the past- all are welcome!\n\nWhy should you attend?  \n\nRare diseases are collectively common\, meaning you are likely to come across them in one form or other in your medical career. Learning about them early can better prepare you as a future clinician and can ensure better outcomes for individuals diagnosed and living with rare conditions.\nRare diseases are gaining increasing momentum as pressing health priorities worldwide\, compounded by advances such as the first-ever UN Resolution on persons with rare diseases and the new UK Rare Diseases Framework. There has never been a better time to get involved with the rare disease community to help create change\, raise awareness and drive your own personal development.\n\nThe Student Voice Prize is much more than just a competition. It has proven itself to be a gateway for many medical students\, nurses and scientists who want to engage with patients from across the medical spectrum\, particularly in rare disease. This is your chance to go beyond and become an advocate for a large\, but poorly represented community and help make a real difference in the lives of rare disease patients and their families.
URL:https://www.m4rd.org/event/beyond-the-student-voice-prize-continuing-your-involvement-in-rare-disease/
LOCATION:ONLINE
CATEGORIES:Networking,Rare Diseases,Student Voice Prize,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2022/02/https-cdn.evbuc_.com-images-217863169-365425818333-1-original.20220125-112138.jpeg
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