BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Medics For Rare Disease - ECPv6.15.20//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-WR-CALNAME:Medics For Rare Disease X-ORIGINAL-URL:https://www.m4rd.org X-WR-CALDESC:Events for Medics For Rare Disease REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:Europe/London BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20200329T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20201025T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20210328T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20211031T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20220327T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20221030T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20230326T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20231029T010000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:+0000 TZOFFSETTO:+0100 TZNAME:BST DTSTART:20240331T010000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:+0100 TZOFFSETTO:+0000 TZNAME:GMT DTSTART:20241027T010000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;VALUE=DATE:20210918 DTEND;VALUE=DATE:20210919 DTSTAMP:20260430T143535 CREATED:20210907T134250Z LAST-MODIFIED:20210907T134250Z UID:8375-1631923200-1632009599@www.m4rd.org SUMMARY:Wolfram Syndrome UK and WellChild International Virtual Conference (Part 1) DESCRIPTION:Register for your place on this international virtual conference hosted by Wolfram Syndrome UK and WellChild.\nThe 10th WS conference will again be held as virtual events over 2 Saturdays in September 2021. \nOn Saturday 18th September there will be 3 presentations from international speakers and on Saturday 25th September there will be a mix of speakers. \nBoth events are open to the Global WS community\, doctors\, researchers and others interested in Wolfram Syndrome or rare diseases. \nClick here to view the full programme and how to register for individual webinar presentations. URL:https://www.m4rd.org/event/wolfram-syndrome-uk-and-wellchild-international-virtual-conference-part-1/ LOCATION:ONLINE CATEGORIES:Conference,Rare Diseases,Research,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/09/NEW-WS-UK-Logo-Hi-Res-ISC.jpg ORGANIZER;CN="Wolfram Syndrome UK":MAILTO:admin@wolframsyndrome.co.uk END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20210923T120000 DTEND;TZID=Europe/London:20210923T130000 DTSTAMP:20260430T143535 CREATED:20210819T091343Z LAST-MODIFIED:20210819T091438Z UID:8336-1632398400-1632402000@www.m4rd.org SUMMARY:Findings from the NCARDRS rare disease collection discovery phase DESCRIPTION:This webinar is about the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) which is part of NDRS\n\n\n\n\n\nAs part of the National Disease Registration service (NDRS) webinar series\, this webinar will cover: \n\n\n\nNCARDRS supporting specialised services\nThe impact of COVID-19 amongst people with rare autoimmune rheumatic disease in England\nUnderstanding histiocytic disease – describing the largest population based cohort\n\nSpeakers: \nDr Mark Bishton\, Consultant Haematologist\, Nottingham University Hospitals NHS Trust\, Honorary Clinical Associate Professor\, University of Nottingham\, School of Medicine \nDr Peter Stilwell\, Higher Rare Disease and Cancer Analyst\, NDRS \nDr Hanhua Liu\, Senior Cancer Intelligence Analyst\, NDRS \n  \nAlthough open to the public\, this webinar may be more useful for those working in healthcare\, commissioning\, public health\, policy or for a rare disease charity or patient group. \nThe webinar will be hosted on MS Teams and it will be recorded and uploaded to the NDRS website shortly after. There will be time for Q&A at the end of the talk. \nIf you have any questions about this webinar or registering to attend\, please contact NDRSengagement@phe.gov.uk. URL:https://www.m4rd.org/event/findings-from-the-ncardrs-rare-disease-collection-discovery-phase/ LOCATION:ONLINE CATEGORIES:Public health,Rare Diseases,Webinar ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/08/rare-disease-2888820_1280.png ORGANIZER;CN="National Disease Registration Service (NDRS)":MAILTO:NDRengagement@phe.gov.uk END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20210925 DTEND;VALUE=DATE:20210926 DTSTAMP:20260430T143535 CREATED:20210907T134709Z LAST-MODIFIED:20210907T134709Z UID:8378-1632528000-1632614399@www.m4rd.org SUMMARY:Wolfram Syndrome UK and WellChild International Virtual Conference (Part 2) DESCRIPTION:Register for your place on this international virtual conference hosted by Wolfram Syndrome UK and WellChild.\nThe 10th WS conference will again be held as virtual events over 2 Saturdays in September 2021. \nOn Saturday 18th September there will be 3 presentations from international speakers and on Saturday 25th September there will be a mix of speakers. \nBoth events are open to the Global WS community\, doctors\, researchers and others interested in Wolfram Syndrome or rare diseases. \nClick here to view the full programme and how to register for individual webinar presentations. URL:https://www.m4rd.org/event/wolfram-syndrome-uk-and-wellchild-international-virtual-conference-part-2/ LOCATION:ONLINE CATEGORIES:Conference,Rare Diseases,Research,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/09/DSCN1409-scaled.jpg ORGANIZER;CN="Wolfram Syndrome UK":MAILTO:admin@wolframsyndrome.co.uk END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20211007T080000 DTEND;TZID=Europe/London:20211007T170000 DTSTAMP:20260430T143535 CREATED:20210705T123316Z LAST-MODIFIED:20210705T131427Z UID:8238-1633593600-1633626000@www.m4rd.org SUMMARY:RAREsummit21 DESCRIPTION:Hear from and engage with a range of stakeholders pioneering change across the rare disease landscape…\n\n\n\n\n\n\n\nCRDN‘s RAREsummit21 is a platform for change. It is the infrastructure that unites patients\, advocates\, experts and leaders to address the challenges faced by people affected by rare diseases. By sharing knowledge and experience\, the journey towards better diagnosis\, treatment and support for patients and their families is smoother and more certain. \n7th October 2021 will see the 5th RAREsummit – a flagship CRDN event gathering over 300 great minds in rare diseases to make connections\, exchange ideas and openly debate possibilities. \nIt’s more than an event – it’s where the magic happens. A powerful movement and platform for change that provides the right ingredients and ecosystem for a better future\, where productive collaborations are nurtured and flourish for future patient impact. \nThe aim of RAREsummit21 is: \n\nto raise awareness of rare conditions and their impact\nto showcase exemplars of impactful patient group collaboration with other stakeholders\nto bring all stakeholders in rare diseases together to drive patient group\, researcher and industry partnering opportunities\nto give stakeholders the knowledge and skills to ensure their practices involve patients and their advocates as essential partners\nto improve the lives of rare disease patients\, together\, with greater efficiency\, collaboration and success URL:https://www.m4rd.org/event/raresummit21/ LOCATION:ONLINE CATEGORIES:Conference,Networking,Rare Diseases,Showcase,Webinar ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/07/RS21-logo-and-date.png ORGANIZER;CN="CRDN":MAILTO:jo@camraredisease.org END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20211018 DTEND;VALUE=DATE:20211020 DTSTAMP:20260430T143535 CREATED:20210907T122346Z LAST-MODIFIED:20210907T122346Z UID:8371-1634515200-1634687999@www.m4rd.org SUMMARY:NORD Breakthrough Summit DESCRIPTION:NORD Rare Diseases and Orphan Products Breakthrough Summit is back on 18 & 19 October 2021 offering a two-day virtual programme.\nThe summit will discuss the latest updates on: \n\nrare disease diagnosis and research\ngenetics and genomics\ndrug development and patient engagement\nFDA oversight\n\nA limited number of free passes may be available to patient advocates\, students and patients.  Click here to apply. URL:https://www.m4rd.org/event/nord-breakthrough-summit/ LOCATION:ONLINE CATEGORIES:Conference,Genetics,Genomics,Networking,Rare Diseases,Research,Webinar ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/09/Screenshot-2021-09-07-at-13.16.58.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20211020T140000 DTEND;TZID=Europe/London:20211020T163000 DTSTAMP:20260430T143535 CREATED:20210930T132522Z LAST-MODIFIED:20210930T132522Z UID:8462-1634738400-1634747400@www.m4rd.org SUMMARY:Learning together: The importance of patient partnership DESCRIPTION:Join the RSM to reflect on the principles of patient partnership and patient care in this afternoon prize meeting. \nDr Bola Owolabi\, Director – Health Inequalities NHS England and NHS Improvement\,  will deliver the keynote lecture\, exploring the importance of patient partnership in the training of our future doctors. Medical students will have the opportunity to deliver a presentation on their reflections of the impact of the pandemic on themselves\, other healthcare professionals and patients. URL:https://www.m4rd.org/event/learning-together-the-importance-of-patient-partnership/ LOCATION:ONLINE CATEGORIES:Royal Society of Medicine,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/09/unnamed-17.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20211101T120000 DTEND;TZID=Europe/London:20211101T124500 DTSTAMP:20260430T143535 CREATED:20211006T131231Z LAST-MODIFIED:20211006T131231Z UID:8471-1635768000-1635770700@www.m4rd.org SUMMARY:Rare disease education: insights on what clinicians know\, want and need DESCRIPTION:SAVE THE DATE \nAn opportunity for clinicians and rare disease patient advocacy groups/advocates to come along to a lunchtime webinar with Medscape to hear about their large physician survey on rare diseases and best practices in rare disease education. \nDr Lucy McKay (CEO M4RD) and Dr Will Evans (Leeds and PRISM Group and Clinical Lead at Mendelian Health) will join Medscape’s Clinical Strategist S Christy Rohani-Montez and Director of Strategic Partnerships\, Jennifer Bomberger to discuss rare disease education and give insights on what clinicians know\, want and need! URL:https://www.m4rd.org/event/rare-disease-education-insights-on-what-clinicians-know-want-and-need/ LOCATION:ONLINE CATEGORIES:clinical,Lunch & learn,Rare Diseases,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/10/1633446900824.jpeg ORGANIZER;CN="Medscape Education Global":MAILTO:aduncan@webmd.net END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20211111T180000 DTEND;TZID=Europe/London:20211111T194500 DTSTAMP:20260430T143535 CREATED:20211105T142052Z LAST-MODIFIED:20211105T142121Z UID:8551-1636653600-1636659900@www.m4rd.org SUMMARY:Genomic ophthalmology: Diagnostics and therapeutics DESCRIPTION:This webinar will provide insights and updates on ophthalmic genetics to ophthalmologists. Specialist speakers will educate delegates on how to order genetic testing\, how whole genome sequencing will improve patient care\, and will discuss the genetic therapies in development including limitations and new technology. \nCPD accredited. \nFree for RSM members. URL:https://www.m4rd.org/event/genomic-ophthalmology-diagnostics-and-therapeutics/ LOCATION:ONLINE CATEGORIES:Ophthalmology,Royal Society of Medicine,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/11/unnamed-18.jpg END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20211117 DTEND;VALUE=DATE:20211119 DTSTAMP:20260430T143535 CREATED:20210825T091828Z LAST-MODIFIED:20210825T091828Z UID:8345-1637107200-1637279999@www.m4rd.org SUMMARY:Vasculitis: From cell to service DESCRIPTION:This two-day free webinar is composed of a multi-professional faculty reflecting the multi-systemic nature of vasculitis\, comprehensive updates on key UKIVAS group activities\, and research and clinical updates in the field of vasculitis will be addressed. \nThis webinar is a collaboration between the Nephrology Section of the Royal Society of Medicine and UKIVAS.  \nAll specialities interested in the management of vasculitis are invited to attend in both paediatric and adult medicine. \nThis webinar will:    \n\nDescribe UKIVAS registry activity with an outline of data linkage projects \nExamine recent service development\, quality improvement initiatives and multi-professional communication networks \nProvide updates on bioresource\, basic science and clinical research \nOutline advances in COVID-19 management and the impact of the pandemic on patients with vasculitis \nLearn of newer therapies\, steroid minimisation approaches and trial pathways across a broad range of the vasculitides \nHighlight advances in paediatric vasculitis and communication  \n\nCPD learning applied. URL:https://www.m4rd.org/event/vasculitis-from-cell-to-service/ LOCATION:Webinar CATEGORIES:clinical,Rare Diseases,Research,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/08/neq02-enews.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20211124T120000 DTEND;TZID=Europe/London:20211124T164500 DTSTAMP:20260430T143535 CREATED:20211105T142429Z LAST-MODIFIED:20211105T142429Z UID:8556-1637755200-1637772300@www.m4rd.org SUMMARY:Artificial intelligence in genomic medicine DESCRIPTION:Join world-renowned experts as they lead exciting discussions exploring the intersection between Artificial Intelligence and Genomic Medicine. Experts leading the panel discussions include Chris Wigley\, CEO of Genomics England\, Professor Pearse Keane\, Professor of Artificial Intelligence Medicine at UCL\, Dr Stephen Kingsmore\, President and CEO of Rady Children’s Institute for Genomic Medicine\, and Professor Mihaela van der Schaar\,Professor of Machine Learning\, Artificial Intelligence and Medicine at the University of Cambridge. \nCPD accredited. \nFree for RSM members. URL:https://www.m4rd.org/event/artificial-intelligence-in-genomic-medicine/ LOCATION:ONLINE CATEGORIES:Genomics,Royal Society of Medicine,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/11/unnamed-19.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20211129T173000 DTEND;TZID=Europe/London:20211129T183000 DTSTAMP:20260430T143535 CREATED:20211105T142723Z LAST-MODIFIED:20211105T142723Z UID:8559-1638207000-1638210600@www.m4rd.org SUMMARY:The genetics of consanguinity and inherited risk DESCRIPTION:This webinar aims to explore the issues and management of risks related to endogamy and consanguinity and will highlight new advances in pre-natal screening protocols. Consanguineous marriage is still practiced by over 30% of the world’s population and in some areas\, the prevalence is as high as 60%. Advances in next-generation gene sequencing have led to a better understanding of pre-emptive carrier risk assessments and adult-onset disease risks. \nCPD accredited. \nFree for RSM members. URL:https://www.m4rd.org/event/the-genetics-of-consanguinity-and-inherited-risk/ LOCATION:ONLINE CATEGORIES:Genetics,Royal Society of Medicine,Webinar ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/11/unnamed-20.jpg END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20211208T190000 DTEND;TZID=Europe/London:20211208T203000 DTSTAMP:20260430T143535 CREATED:20211109T091255Z LAST-MODIFIED:20211202T100002Z UID:8566-1638990000-1638995400@www.m4rd.org SUMMARY:Diagnosis and Management of Rare Diseases DESCRIPTION:This FREE live 90-minute webinar will focus on the diagnosis and management of rare diseases\, in particular haematological conditions.\nThe fundamentals of a rare disease – what is it? Who is affected? What’s impact and challenges when a condition is rare? What do rare conditions have in common? How can clinicians seek help\, advice and alleviate some of the burden of rarity. The webinar will focus on both generic issues relevant to patients and clinicians and also a detailed look at some example haematological conditions. The webinar will include practical examples and case based discussions. \nLearning Outcomes: \n\nAppreciate that rare conditions can impact patients in similar ways\nHow to approach potential rare diseases from a primary care viewpoint\nRelevance of rare diseases to your clinical practice\, how you might recognise them and when to ask for advice/refer\nSpecific haematological learning for example in sickle cell disease and haemophilia\nIdentify resources that can support you and your patient\n\nThere will be plenty of time in this webinar for Q&A. \nSpeakers will include: \nDr Lucy McKay\, CEO of Medics4RareDiseases\nDr William Evans\, Chairman NPUK\nMrs Karen Harrison\, Alex The Leukodystrophy Charity \n  URL:https://www.m4rd.org/event/rare-blood-diseases/ LOCATION:ONLINE CATEGORIES:Blood,clinical,RCGP,Webinar ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/11/RCGP-event-1920-x-1080-px.png ORGANIZER;CN="Royal College of General Practioners":MAILTO:info@rcgp.org.uk END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20211214T110000 DTEND;TZID=Europe/London:20211214T123000 DTSTAMP:20260430T143535 CREATED:20211119T093833Z LAST-MODIFIED:20211119T093833Z UID:8625-1639479600-1639485000@www.m4rd.org SUMMARY:Maximising engagement with healthcare professionals DESCRIPTION:Join this webinar to explore the practical things patient groups can do to make sure they are engaging with HCPs in the most beneficial way.\nMost rare diseases are not concentrated in one area or country and do not affect one singular body system\, which makes finding healthcare professionals (HCPs) or specialists who understand them a real challenge for patients and patient organisations. Yet\, it is often a top strategic priority for patient organisations to find and engage with these professionals to drive faster diagnoses\, better understanding of and research into rare conditions. \nThis can be a real challenge when most HCPs have a very limited knowledge of rare conditions. HCPs often look straight to google for their research where they can be met with misinformation and do not always find the patient organisations that are the real experts straight away. Thus\, it falls onto the shoulders of these patient organisations to make themselves more visible and receptive to engagement with healthcare professionals. Whether at a basic operational level\, an organisational level\, through external collaborations or even by working with the organisations such as the NHS and NICE. \n\n\n\n\nThis webinar will:  \n\n\n\n\n\n\n\n\n\n\n\n\n\nExplore the different levels on which patient organisations can base their engagement with medical professionals\nCover the practical things patients can do (no matter what size or capacity) to engage efficiently and sustainably with HCPs\nHighlight case studies from across the rare space of what different patient groups are doing\n\nPlease note: This is the first in a series of two webinars which will explore engagement with HCPs. \n\n\n\n\n  URL:https://www.m4rd.org/event/maximising-engagement-with-healthcare-professionals/ CATEGORIES:Patient advocacy,Rare Diseases,Webinar ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/11/unnamed-13.png ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20220201T183000 DTEND;TZID=Europe/London:20220201T200000 DTSTAMP:20260430T143535 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:20260430T143535 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:20260430T143535 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 END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20220215T180000 DTEND;TZID=Europe/London:20220215T203000 DTSTAMP:20260430T143535 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:20260430T143535 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:20260430T143535 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 END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20220517 DTEND;VALUE=DATE:20220520 DTSTAMP:20260430T143535 CREATED:20220408T090704Z LAST-MODIFIED:20220408T090704Z UID:9276-1652745600-1653004799@www.m4rd.org SUMMARY:Online workshop: Understanding access and reimbursement DESCRIPTION:Getting wider access to drugs for as many patients a possible is a clear priority in the drug development process\, especially for patient groups who are working to secure research into and treatments for their rare conditions.\nHowever\, understanding how to secure access to newly developed treatments is an often-neglected challenge. The processes involved in securing reimbursement can be intimidating to patient groups and act as a real barrier to engagement.  \nThis workshop will outline the basics of access and reimbursement: what it means\, when it happens\, and who is involved. It will also explore the key ways in which patient groups can contribute to the process and what should they be prepared for. Attendees will leave feeling more confident in what the access and reimbursement process involves and where they can add value. \nDay one: Access and reimbursement 101\, back to basics\nDay two: Understanding the NICE appraisal process\nDay three: where can patient groups get involved? URL:https://www.m4rd.org/event/online-workshop-understanding-access-and-reimbursement/ LOCATION:ONLINE CATEGORIES:Patient Information Day,Rare Diseases,Webinar ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2022/04/Asset-8-e1649337904516.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20220608T140000 DTEND;TZID=Europe/London:20220608T153000 DTSTAMP:20260430T143535 CREATED:20220524T133648Z LAST-MODIFIED:20220524T133648Z UID:9518-1654696800-1654702200@www.m4rd.org SUMMARY:Understanding Rare Disease: Communicating with Patients DESCRIPTION:Sign up to learn about the role of communication in rare disease from those affected directly\, in an interactive FREE virtual event!\nAbout this event\nThe event will kick off with a session from our guest speaker\, who will explore the value of effective and sensitive communication skills when it comes to handling complex conditions\, such as rare disease. Attendees will then have the chance to speak directly with some of the I am Number 17 campaign changemakers and hear first-hand about how their diagnostic odysseys came to an end\, through perseverance and working together with the help of their HCP/Consultants. \nWhat will you get from attending this event?\n• Gain experience from communicating directly with those affected by rare disease \n• Improve your understanding of rare disease and how to react when faced with a potential rare disease \n• Develop your communication skills (notability how to share sensitive information and break bad news) \n• Gain a certificate of attendance to exhibit your enhanced learning \nWe hope that learning from real-life examples will provide you with tangible learnings to take along your medical careers and ultimately equip you to Find the 1 in 17 in the future… \nAll medical students are welcome to attend the event! \nPlease note this event may be beneficial for students preparing for upcoming OSCE examinations. \nWe look forward to seeing you there and learning together! \nThis event is initiated and funded by Takeda UK\, run together with Medics4RareDisease. URL:https://www.m4rd.org/event/understanding-rare-disease-communicating-with-patients/ CATEGORIES:Medical Students,Rare Diseases,Webinar,workshop ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2022/05/https-cdn.evbuc_.com-images-283451039-908956374363-1-original.20220512-111502.jpeg END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20220613T173000 DTEND;TZID=Europe/London:20220613T183000 DTSTAMP:20260430T143535 CREATED:20220504T084323Z LAST-MODIFIED:20220504T084323Z UID:9302-1655141400-1655145000@www.m4rd.org SUMMARY:The genetics of intellectual disability: Episode 15 DESCRIPTION:This webinar is part of the popular Genetics of webinar series and will provide an interesting update on the genetic origins of intellectual disability\, as well as explore what challenges remain in this area. \nOur speakers will explore what research is required after a genetic diagnosis of intellectual disability and what families would value the most from the diagnostic experience. This webinar is also a special chance to discuss what the experience of receiving a genetic diagnosis is like for patients and their families. \nDuring this webinar you will: \n\nUnderstand what we do know about the genetic origin of intellectual disabilities\nAppreciate the challenges and opportunities in research in this field\nRecognise how post-diagnostic research is important in order to understand the different ways people experience intellectual disability\nValue the insights gained from those who have received a genetic diagnosis of intellectual disability \n\nThis meeting is in association with the RSM Intellectual Disability Section. \nThe genetics of… series has been developed following feedback from delegates. Presented by the Medical Genetics section of the Royal Society of Medicine\, this series of talks will focus on the role of genetics in different areas of health and wellbeing. URL:https://www.m4rd.org/event/the-genetics-of-intellectual-disability-episode-15/ LOCATION:LIVE STREAM CATEGORIES:Genetics,Rare Diseases,Royal Society of Medicine,Webinar ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2022/05/Screenshot-2022-05-04-at-09.38.35.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20220707T173000 DTEND;TZID=Europe/London:20220707T183000 DTSTAMP:20260430T143535 CREATED:20220428T122714Z LAST-MODIFIED:20220428T122714Z UID:9298-1657215000-1657218600@www.m4rd.org SUMMARY:Facing up to the genomic gap: Tackling equality and diversity in genomics on DESCRIPTION:This webinar is part of the popular Genetics of webinar series and will discuss the challenge of equality and diversity in genomic research and clinical settings and strategies to address this. \nGenomic research has traditionally been focused on caucasian populations\, which leads to inherent biases in genomic findings translated into clinical research. Underrepresentation of other populations in genomic datasets and biobanking endeavours leads to genomic medicine services being underutilized and inaccessible to these communities. \nDuring this webinar you will: \n\nUnderstand that genomic data is under-representative of many minority populations which has a direct impact on genomic research\nDevelop an idea of how the scientific community is trying to address this issue\nAppreciate the challenges of ensuring that diverse communities are able to access the genomic medicine service\nDescribe strategies that are being undertaken to try and improve genomic testing provision within diverse communities URL:https://www.m4rd.org/event/facing-up-to-the-genomic-gap-tackling-equality-and-diversity-in-genomics-on/ LOCATION:LIVE STREAM CATEGORIES:Genomics,Royal Society of Medicine,Webinar ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2022/04/Screenshot-2022-04-28-at-13.25.27.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20221020T180000 DTEND;TZID=Europe/London:20221020T193000 DTSTAMP:20260430T143535 CREATED:20220930T083524Z LAST-MODIFIED:20220930T083524Z UID:10112-1666288800-1666294200@www.m4rd.org SUMMARY:Young People’s Genomics Café DESCRIPTION:Are you a young person interested in finding out more about genomics and health\, or affected by a rare or genetic condition? \nChromosomes!\nDr Andrew Fry\, Clinical Senior Lecturer in Medical Genetics\, Cardiff University \nAn Introduction to Pharmacogenomics\nSophie Harding\, Pharmacogenomics Lead\, Royal Pharmaceutical Society of GB \nMedics4Rare Diseases\nLucy McKay\, CEO Medics4RareDiseases \nEveryone is welcome to this FREE online event. \nRegister for Virtual Café: https://tinyurl.com/34ehzs74 URL:https://www.m4rd.org/event/young-peoples-genomics-cafe/ LOCATION:LIVE STREAM CATEGORIES:Child and Young Person,Genetics,Genomics,Rare Diseases,Webinar ATTACH;FMTTYPE=image/webp:https://www.m4rd.org/wp-content/uploads/2022/09/https-cdn.evbuc_.com-images-353431989-221628550545-1-original.20220913-144210.webp END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20230222T180000 DTEND;TZID=Europe/London:20230222T193000 DTSTAMP:20260430T143535 CREATED:20230222T113454Z LAST-MODIFIED:20230222T113454Z UID:10462-1677088800-1677094200@www.m4rd.org SUMMARY:Shining a Light on Silver-Russell Syndrome (SRS) on Rare Disease Day DESCRIPTION:Join us for this ONLINE event on Rare Disease Day 2023\, find out about how rare genetic conditions\, like SRS\, are diagnosed and hear about what it’s like to live with Silver-Russell syndrome (SRS). \n\n\nFeaturing \n\nGracie Taylor\, Patient Voice (& Science Insights Alumni)\nProf Mary Porteous\, SE Scotland Rare Disease Diagnostic Service\nDr Emma Wakeling\, Clinical Genetics and Genomics Consultant\, Great Ormond Street Hospital  & Medical Advisor to Child Growth Foundation\nJeff Bolton\, Chair\, Child Growth Foundation URL:https://www.m4rd.org/event/silver-russell-syndrome/ LOCATION:ONLINE CATEGORIES:Rare Diseases,Webinar ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/02/image.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20230228T110000 DTEND;TZID=Europe/London:20230228T130000 DTSTAMP:20260430T143535 CREATED:20230223T104435Z LAST-MODIFIED:20230223T104435Z UID:10466-1677582000-1677589200@www.m4rd.org SUMMARY:Conducting rare disease research in the context of clinical care DESCRIPTION:11.00 am Introduction and welcome Tony Lockett (CPMR London) \n11.05 am Dr Lucy McKay (Medics for rare diseases)- Can Medical Education\nHelp in the Conduct of Research in Rare Diseases? \n11.30 am Dr Robin Lachman (University College London) – Does\nEvidence-based Medicine Work for Rare Diseases? \n12.00 pm Fleur Chandler (Sanofi) Putting it into perspective\, a view from\nboth sides for evidence generation in rare paediatric conditions \nJoin the meeting here  URL:https://www.m4rd.org/event/conducting-rare-disease-research-in-the-context-of-clinical-care/ LOCATION:ONLINE CATEGORIES:Rare Diseases,Webinar ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/02/Screenshot-2023-02-23-at-10.43.08.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20230228T190000 DTEND;TZID=Europe/London:20230228T203000 DTSTAMP:20260430T143535 CREATED:20230120T150914Z LAST-MODIFIED:20230120T152039Z UID:10328-1677610800-1677616200@www.m4rd.org SUMMARY:Beyond the Student Voice Prize DESCRIPTION:The Student Voice Prize is delighted to invite you to our second annual 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 involved and continue your advocacy.\nWhat can you expect? \nThe event will be an informal opportunity for you to meet fellow entrants to the competition\, connect with patient group advocates and hear from those working actively in rare diseases. There will be a series of short inspiring presentations from a cross-section of individuals as well as handy guidance for getting more involved with the rare disease community and building a focus on rare into your career. \nWho is this event for? \n\nPrevious entrants of the Student Voice Prize\nProspective 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? \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. \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.\n———————————————————————————————–\nThe Student Voice Prize is a project run in collaboration by Medics4RareDiseases (Charity No 1183996) and Beacon (Charity No 1149646) \n  URL:https://www.m4rd.org/event/btsvp/ LOCATION:LIVE STREAM CATEGORIES:Rare Diseases,Student Voice Prize,Webinar ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/01/stvp.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20230317 DTEND;VALUE=DATE:20230319 DTSTAMP:20260430T143535 CREATED:20230224T155726Z LAST-MODIFIED:20230224T160321Z UID:10478-1679011200-1679183999@www.m4rd.org SUMMARY:RSE Network Support Meeting DESCRIPTION:Rett syndrome is a rare\, genetic\, neurological disorder affecting mainly females (1:10\,000) and very few males. It is present from conception. After a period of ‘near normal’ development\, the child experiences a regression in key skills\, usually mobility\, speech and hand use between the ages of one and two years. The child may appear very withdrawn during this stage and this often leads to a misdiagnosis of being on the autistic spectrum. Multiple comorbidities appear post regression including epilepsy\, breathing disruption\, scoliosis\, gut and bowel problems. Whilst the disorder is genetic\, in the majority of cases it is not inherited. Rett syndrome is usually caused by a fault on a gene called MECP2 which is found on the X chromosome. People with Rett syndrome have profound and multiple physical and learning disabilities. They are totally reliant on others for support throughout their lives\, yet they are radiating love and enjoying their life to the fullest. \nWe are delighted that registration is now open for the Rett Syndrome Europe Network Support and Research Event. Many thanks to our funders The European Joint Programme for Rare Diseases Network Support Scheme and our sponsors Anavex\, Taysha\, Neurogene and Neuren for making this possible. \nThe main meeting is in Budapest\, Hungary with satellite meetings in the UK\, Netherlands\, Serbia\, Georgia\, Croatia and Turkey. The ‘in person’ satellite meetings are by invitation only but anyone can register to view the presentations which are being shown on 17/18 March 2023. They will also be available post event to view at a time of your choosing. \nWe have a limited number of places for people to attend the satellite meeting at The Angela Ruskin University\, Cambridge in person. It is free including lunch both days and dinner on the Friday evening. If you are interested in this opportunity to meet and network with several experienced Rett researchers and clinicians\, please email bjenner@rettsyndrome.eu URL:https://www.m4rd.org/event/rse-network-support-meeting/ LOCATION:ONLINE CATEGORIES:M4RD,Rare Diseases,Research,Webinar ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/02/RSE-network-and-research-meeting.png ORGANIZER;CN="Rett UK":MAILTO:keren.decoito@rettuk.org END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20230731T170000 DTEND;TZID=Europe/London:20230731T180000 DTSTAMP:20260430T143535 CREATED:20230710T105237Z LAST-MODIFIED:20230710T105237Z UID:11103-1690822800-1690826400@www.m4rd.org SUMMARY:Beyond the clinic: Sickle Cell Disease DESCRIPTION:This webinar continues a new series of webinars that highlights the lived experiences behind genetic conditions. In an effort to highlight experts outside of the medical field the Medical Genetics Section will be using its platform to allow people with lived experience and other stakeholders to provide insight into genetic conditions\, that are usually taught from a biomedical perspective. \nThis meeting focuses on Sickle Cell Disease\, the most common rare genetic condition in the UK. Despite this fact people with Sickle Cell Disease still have considerable unmet needs including lack of access to treatment and investment in research. The treatment of patients with Sickle Cell Disease has also made news headlines in recent times due to failings in the health system. In this meeting we will hear from advocates in this area to understand the needs of patients and how we can better serve this community. \nWe will also hear from contributors to The No-One’s Listening report published by The Sickle Cell Society and The All Party Parliamentary Group for Sickle Cell and Thalassaemia. \nThis meeting aims to: \n\nRaise awareness of how Sickle Cell Disease impacts families and communities\nHighlight the unmet needs of patients living with Sickle Cell Disease\nLearn from the outcomes of The No-one’s Listening Report\n\nThis is an online event URL:https://www.m4rd.org/event/beyond-the-clinic-sickle-cell-disease/ LOCATION:The Royal Society of Medicine CATEGORIES:Webinar ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/07/Screenshot-2023-07-10-at-11.51.55.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=Europe/London:20230906T140000 DTEND;TZID=Europe/London:20230906T160000 DTSTAMP:20260430T143535 CREATED:20230825T093051Z LAST-MODIFIED:20230825T093330Z UID:11221-1694008800-1694016000@www.m4rd.org SUMMARY:Living with Uncertainty & Impact of Trauma Mental Wellbeing Webinar DESCRIPTION:People affected by a rare and undiagnosed condition live with an accumulative impact on their mental wellbeing. Specifically at an individual level\, people living with a rare disease (PLWRD) can have an associated mental health co-morbidity\, and at a population level\, the community live with the increased psychological impact associated with the rare disease journey across all stages of life. Furthermore\, the rare disease community has increased exposure to social inequality and discrimination\, which are risk factors affecting poor mental wellbeing. The rare disease community has identified the need to look beyond the physiological symptoms of a rare condition\, and recognise the importance of psychological support as a fully integrated part of the coordination of care. Without support\, there will continue to be a detrimental impact on the mental health of those affected by rare conditions\, hindering them from effective participation in society. \nThis webinar will begin by breaking down the biopsychosocial continuum and addressing the intersectional needs of our community. It will then move on to a panel discussion on living with uncertainty and the impact of trauma\, ending with a discussion on the impact of living with congential malformations. \nThe outcome of the webinar will be the launch of a public call for expressions of interest to join the new EURORDIS Mental Wellbeing Partnership Network\, where patient representatives will partner with experts to identify common mental health needs and inform EURORDIS’ strategic and policy action. URL:https://www.m4rd.org/event/living-with-uncertainty-impact-of-trauma-mental-wellbeing-webinar/ LOCATION:ONLINE CATEGORIES:Conference,Webinar ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/08/Screenshot-2023-08-25-at-10.29.59.png END:VEVENT END:VCALENDAR