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X-WR-CALDESC:Events for Medics For Rare Disease
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210622T173000
DTEND;TZID=Europe/London:20210622T183000
DTSTAMP:20260405T172811
CREATED:20210430T125840Z
LAST-MODIFIED:20210430T125840Z
UID:7876-1624383000-1624386600@www.m4rd.org
SUMMARY:Stuart Green Memorial Lecture 2021
DESCRIPTION:Dr Stuart Green was a consultant at Birmingham Children’s Hospital who set up the Paediatric Neurology department. He was known internationallly for his expertise and was loved and respected by patients and colleagues alike for his kindness\, wit and wisdom.\nThis public lecture set up in his memory takes place at Birmingham Children’s Hospital\, every year in June and is appropriate also for a non-specialist audience. \nThe 2021 lecture will be held as a virtual event on Tuesday 22nd June 5.30-6.30pm. Young author and former BCH patient Sarah Lippett will talk about her experience of growing up with a rare disease as illustrated in her award-winning graphic novel “A puff of smoke” http://www.crayonlegs.com/portfolio/a-puff-of-smoke/. \nYou can find out more about the Stuart Green Memorial Fund at https://bwc.nhs.uk/stuart-green-memorial-lectures-and-bursary/
URL:https://www.m4rd.org/event/stuart-green-memorial-lecture-2021/
LOCATION:ONLINE
CATEGORIES:Lectures,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/04/Screenshot-2021-04-30-at-13.51.29.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210630T093000
DTEND;TZID=Europe/London:20210630T153000
DTSTAMP:20260405T172811
CREATED:20210608T084319Z
LAST-MODIFIED:20210608T084319Z
UID:8175-1625045400-1625067000@www.m4rd.org
SUMMARY:Diverse Discoveries and Inclusive Insights Conference
DESCRIPTION:Come together with like minded professionals who have a passion to ensure no one is left behind. \n\nHear from organisations who are leading the way in engaging with our diverse and multi-cultural society\, the importance of the language used\, developments in genetics and how health inequalities can have a devastating impact on the lives of families affected by genetic conditions. \n\nBreaking Down Barriers know that it is often the fear of offending that stops people from doing anything. This event is a safe space for people to learn from others and explore new innovative approaches to ensure your organisation is inclusive and diverse to meet the needs of the community you serve.\n\n\n\n\nTop Topics:\n\nHealth inequalities the challenges and solutions\nThe impact of doing nothing\nDevelopments in Genetics and pre-implantation diagnosis\nThe power of language\n\nYou can register for this innovative event by following the link below: \nhttps://attendee.gotowebinar.com/register/7018232613206242062
URL:https://www.m4rd.org/event/diverse-discoveries-and-inclusive-insights-conference/
LOCATION:ONLINE
CATEGORIES:Conference,Genetics,Networking,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/06/Untitled-design-14.png
ORGANIZER;CN="Breaking Down Barriers":MAILTO:kerry.leeson@alstrom.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210708T100000
DTEND;TZID=Europe/London:20210708T120000
DTSTAMP:20260405T172811
CREATED:20210705T191725Z
LAST-MODIFIED:20210705T191725Z
UID:8246-1625738400-1625745600@www.m4rd.org
SUMMARY:Public Dialogue on Whole Genome Sequencing for Newborn Screening
DESCRIPTION:An online event to find out about a nationwide public dialogue on the implications of using whole genome sequencing for newborn screening.\n\n\n\n\n\n\n\nOne hundred and thirty members of the public from around the UK have taken part in a dialogue about the implications for the NHS and society of using whole genome sequencing for newborn screening. The dialogue was commissioned by Genomics England and the UK National Screening Committee\, co-funded and supported by UKRI’s Sciencewise programme. Come and hear what the dialogue has told us about the attitudes\, aspirations and concerns of the public about genomics and newborn screening. What are the values and principles that inform these views? How do we trade off potential harms with potential benefits for the child\, the parents\, the wider family\, the NHS and society more broadly? What might a newborn screening programme using genomics look like? What safeguards and information are needed?
URL:https://www.m4rd.org/event/public-dialogue-on-whole-genome-sequencing-for-newborn-screening/
LOCATION:ONLINE
CATEGORIES:Conference,Genetics,Genomics,Public health,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/07/BCFE2D38-DFB4-4457-A7A7-718DDE97F926.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210726T173000
DTEND;TZID=Europe/London:20210726T183000
DTSTAMP:20260405T172811
CREATED:20210705T131344Z
LAST-MODIFIED:20210705T131344Z
UID:8241-1627320600-1627324200@www.m4rd.org
SUMMARY:The genetics of primary care
DESCRIPTION:The eleventh webinar in The genetics of… series from the Royal Society of Medicine. This webinar will equip attendees with the clinical skills required to help patients presenting with common genetic situations. \nFrequent challenges for primary care workers include identifying higher cancer risks in patients\, spotting a child with a rare disease and understanding consumer genetic test reports. This hour-long webinar will provide you with the clinical know-how you need to tackle these frequent scenarios\, with the opportunity to ask questions of the panel. \nDuring this webinar you will: \n\nProvide delegates with clinical and digital tools needed to assess a patients risk of developing certain cancers based on their family history\nRecognise the pattern of presentation to primary care that could indicate a patient has a rare disease\nEquip attendees with the steps to follow when presented with results of patient-organised DNA genetic tests\n\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 well-being.
URL:https://www.m4rd.org/event/the-genetics-of-primary-care/
LOCATION:ONLINE
CATEGORIES:Genetics,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/07/Screenshot-2021-07-05-at-14.11.58.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210806T133000
DTEND;TZID=Europe/London:20210806T153000
DTSTAMP:20260405T172811
CREATED:20210720T085833Z
LAST-MODIFIED:20210720T085833Z
UID:8289-1628256600-1628263800@www.m4rd.org
SUMMARY:Afternoon Tea with the Childhood Tumour Trust
DESCRIPTION:Want to learn more about Neurofibromatosis Type 1\, with a focus on diagnosis and care? \nCome along to Danesfield House at 1.30pm on Friday 6th August for Afternoon Tea with the Childhood Tumour Trust.  With Greg Smith MP and guest speakers. \nRSVP to vanessa@childhoodtumourtrust.org.uk
URL:https://www.m4rd.org/event/afternoon-tea-with-the-childhood-tumour-trust/
LOCATION:Danesfield House\, Henley Road\, Marlow\, Buckinghamshire\, SL7 2EY\, United Kingdom
CATEGORIES:Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/07/CTT-Danesfield-House-Invite-1-1-1.jpg
ORGANIZER;CN="Childhood Tumour Trust":MAILTO:info@childhoodtumourtrust.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210918
DTEND;VALUE=DATE:20210919
DTSTAMP:20260405T172811
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:20260405T172811
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:20260405T172811
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:20260405T172811
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:20260405T172811
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:20260405T172811
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:20260405T172811
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:20260405T172811
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:20260405T172811
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:20211122T123000
DTEND;TZID=Europe/London:20211122T143000
DTSTAMP:20260405T172811
CREATED:20211104T085719Z
LAST-MODIFIED:20211104T085719Z
UID:8546-1637584200-1637591400@www.m4rd.org
SUMMARY:Understanding Health Inequalities Event
DESCRIPTION:Are you affected by a rare condition and from a diverse and marginalised community?\nIf so\, join Breaking Down Barriers for their virtual event\, to help them understand how health inequalities affect you. People diagnosed with a rare condition\, family members\, carers\, and charity representatives are all welcome to come along and offer support. BDB want the conversation to be as open\, accessible and as inclusive as possible. \nWhat will be discussed?\nHealth inequalities are unfair and avoidable differences in health between different groups of people. Breaking Down Barriers and the Department of Health and Social Care are working in partnership to understand more about the health inequalities experienced by people from diverse and marginalised communities who are also affected by a rare condition. We want to listen and learn about people’s lived experiences and identify ways that we can address health inequalities throughout new policies for people with rare conditions that are being developed now. \nHow to get involved\nIf you would like to join us\, please email Kerry.leeson@alstrom.org.uk or call 077161 35940. \nBDB will then send you joining instructions. BDB can also arrange a 1-1 chat before the event if that is helpful. Please let them know if there is anything they can do to support you to take part.
URL:https://www.m4rd.org/event/understanding-health-inequalities-event/
LOCATION:ONLINE
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/11/FDRaBAnXIAoOjmV.jpeg
ORGANIZER;CN="Breaking Down Barriers":MAILTO:kerry.leeson@alstrom.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20211124T120000
DTEND;TZID=Europe/London:20211124T164500
DTSTAMP:20260405T172811
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:20260405T172811
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:20211130T190000
DTEND;TZID=Europe/London:20211130T203000
DTSTAMP:20260405T172811
CREATED:20211014T080745Z
LAST-MODIFIED:20211014T080851Z
UID:8488-1638298800-1638304200@www.m4rd.org
SUMMARY:Top tips for managing rare disease in GP
DESCRIPTION:The RCGP Northern Ireland Faculty is delighted to be collaborating with the Northern Ireland Rare Disease Partnership (NIRDP) to host a ‘Top Tips for Managing Rare Disease in GP’ evening. Topics provided aim to help you manage patients with rare disease.\nThe event is hosted by the RCGP Northern Ireland and some aspects may be NI focused\, but we welcome GPs from any nation to join if interested. \nSpeakers include: \n\nDr Caoimhe McKenna\, Clinical Genetic Registrar\nDr Genevieve Allum\, GP\nDr Lucy McKay\, CEO M4RD\nProf AJ McKnighht\, Queens University\, Belfast\n\nFor any queries or further information please contact Fiona Monaghan fiona.monaghan@rcgp.org.uk 
URL:https://www.m4rd.org/event/top-tips-for-managing-rare-disease-in-gp/
LOCATION:ONLINE
CATEGORIES:clinical,General Practice,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/10/FBfIgNeXoAQmPnI.jpeg
ORGANIZER;CN="Northern Ireland Rare Disease Partnership (NIRDP)":MAILTO:info@nirdp.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20211208T190000
DTEND;TZID=Europe/London:20211208T203000
DTSTAMP:20260405T172811
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:20260405T172811
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;VALUE=DATE:20220201
DTEND;VALUE=DATE:20220204
DTSTAMP:20260405T172811
CREATED:20211103T132333Z
LAST-MODIFIED:20211103T132333Z
UID:8540-1643673600-1643932799@www.m4rd.org
SUMMARY:The International Rare Disease Showcase
DESCRIPTION:The International Rare Disease Showcase is a virtual event like no other\, bringing everyone together including\, patient groups\, researchers\, medical professionals\, industry representatives and of course patients themselves.\nHere’s what to expect:  \n\nThree days of interactive sessions led by global experts and advocates\nConversations on policy\, patient advocacy\, access and approval\, new technologies\, research and data collection with an international focus!\nPanel discussions and breakout rooms where attendees will be able to interact with speakers and other attendees\nA worldwide\, diverse and multi-stakeholder audience\nPatient group and industry virtual exhibition booths and dedicated patient group poster zone\nAll material will be available to view on-demand for 21 days after the event
URL:https://www.m4rd.org/event/the-international-rare-disease-showcase/
LOCATION:ONLINE
CATEGORIES:Conference,Networking,Rare Diseases,Showcase
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/11/unnamed-12.png
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220201T183000
DTEND;TZID=Europe/London:20220201T200000
DTSTAMP:20260405T172811
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:20260405T172811
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:20260405T172811
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:20260405T172811
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:20260405T172811
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:20260405T172811
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:20220504
DTEND;VALUE=DATE:20220505
DTSTAMP:20260405T172811
CREATED:20220408T083425Z
LAST-MODIFIED:20220408T083425Z
UID:9272-1651622400-1651708799@www.m4rd.org
SUMMARY:Genomics England Research Summit 2022
DESCRIPTION:The Summit is an exciting one-day event that explores the latest research and technology innovations from Genomics England\, partners and complementary fields.\nThrough talks\, panel discussions\, posters and exhibitions across four themes\, you can take part in a valuable programme tailored to your areas of interest. Make connections\, learn new skills and help to shape the next steps in strengthening the ecosystem that’s turning science into healthcare for everyone. \nThe Summit is both virtual and in-person\, held at the Business Design Centre in Islington\, London\, easily accessed from King’s Cross and St Pancras International stations.
URL:https://www.m4rd.org/event/genomics-england-research-summit-2022/
LOCATION:Business Design Centre\, 52 Upper Street\, London\, N1 0QH\, United Kingdom
CATEGORIES:Conference,Genomics,Networking,Research
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2022/04/bknvflhiuapya6edkdrn.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220504T181500
DTEND;TZID=Europe/London:20220504T201500
DTSTAMP:20260405T172811
CREATED:20220406T082707Z
LAST-MODIFIED:20220406T082707Z
UID:9253-1651688100-1651695300@www.m4rd.org
SUMMARY:Alumni Angles: In conversation with Professor Sir Andrew Pollard
DESCRIPTION:Join QMUL for a special in conversation event with vaccine expert and alumnus Professor Sir Andrew Pollard (Medicine MBBS\, 1989)\, who leads the team behind the Oxford-AstraZeneca vaccine for COVID-19. \nYou will also hear from the Principal\, Professor Colin Bailey CBE\, Professor Sir Mark Caulfield\, Vice-Principal (Health)\, and our chair\, Dr Vanessa Apea\, Consultant Physician in Sexual Health and HIV Medicine at Barts Health NHS Trust. \nThis event will be held in the Perrin Lecture Theatre\, Whitechapel campus and will be live-streamed to an online audience.
URL:https://www.m4rd.org/event/alumni-angles-in-conversation-with-professor-sir-andrew-pollard/
LOCATION:Queen Mary University of London\, Perrin Lecture Theatre\, Blizard Building\, Faculty of Medicine & Dentistry\, 4 Newark Street\, London\, E1 2AT\, United Kingdom
CATEGORIES:COVID-19,Lectures
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2022/04/Professor-Andrew-Pollard-1.jpg
ORGANIZER;CN="Queen Mary Alumni Engagement Team":MAILTO:s.gazi@qmul.ac.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220509T193000
DTEND;TZID=Europe/London:20220509T213000
DTSTAMP:20260405T172811
CREATED:20220407T133529Z
LAST-MODIFIED:20220407T133529Z
UID:9261-1652124600-1652131800@www.m4rd.org
SUMMARY:Not All Genes are Equal (Pint of Science)
DESCRIPTION:Every person has two copies of each gene\, one inherited from each parent. Most genes are the same in all people\, but a small number of them are slightly different. These tiny differences contribute to each person’s unique physical features.\nLet’s explore rare imprinted genes\, a special class where one parental copy is switched off\,  and the life long impact that can have\, and consider what happens when your genes make you slightly more hungry all of the time. \n  \nIs obesity a choice? Led by Dr Giles Yeo\nIt is clear that the cause of obesity is a result of eating more than you burn. It is physics. What is more complex to answer is why some people eat more than others? Differences in our genetic make-up mean some of us are slightly more hungry all the time and so eat more than others. In contrast to the prevailing view\, obesity is not a choice. People with obesity are not bad or lazy; rather\, they are fighting their biology. \nA genetic battle of the sexes and rare imprinting disorders.  Led by Dr Miguel Constância\nImprinted genes are a special class of genes because one of the two parental copies is silenced by epigenetic mechanisms during development. These genes have key roles in how we acquire resources in the womb and throughout life.\nUnlike genetic changes\, epigenetic changes are reversible and do not change your DNA sequence\, but they can change how your body reads a DNA sequence.\nIn this talk we’ll explore what happens when the only active copy of imprinted genes is deleted\, mutated or silenced due to epigenetics and what happens if the silent copy of imprinted genes becomes activated.
URL:https://www.m4rd.org/event/not-all-genes-are-equal-pint-of-science/
LOCATION:Espresso Library\, 210 East Road\, Cambridge\, Cambridgeshire\, CB1 1BG\, United Kingdom
CATEGORIES:Festival
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2022/04/1649058865449.jpeg
ORGANIZER;CN="CRDN":MAILTO:jo@camraredisease.org
END:VEVENT
END:VCALENDAR