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X-WR-CALNAME:Medics For Rare Disease
X-ORIGINAL-URL:https://www.m4rd.org
X-WR-CALDESC:Events for Medics For Rare Disease
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230623T150000
DTEND;TZID=Europe/London:20230623T170000
DTSTAMP:20260530T014046
CREATED:20230615T132335Z
LAST-MODIFIED:20230615T132335Z
UID:11045-1687532400-1687539600@www.m4rd.org
SUMMARY:Journal Club: On the 12th Day of Christmas\, a statistician said to me...
DESCRIPTION:The month’s leading up to Christmas are a magical time for medical research. The impending holiday season creates a dynamic upsurge in productivity\, with researchers finding time to finish off statistical analyses\, draft manuscripts and respond to reviewers comments. This activity leads to a plethora of submissions to journals such as The BMJ in December\, so that researches can finish the year with a sense of academic achievement and enjoy the festivities with their loves ones. \nIn this talk\, Professor Richard Riley will discuss 12 of the most common issues enountered during a  statistical peer review at The BMJ\, as identified by a survey of our statistical editors. \nThe topics will be presented with real examples and the talk is aimed as a broad audience\, aiming to shine a Christmas star towards better statistical practice. \nYou can register for the event Here \n 
URL:https://www.m4rd.org/event/journal-club-on-the-12th-day-of-christmas-a-statistician-said-to-me/
LOCATION:ONLINE
CATEGORIES:Conference,Genetics
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/06/Screenshot-2023-06-15-at-14.23.05.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221208
DTEND;VALUE=DATE:20221209
DTSTAMP:20260530T014046
CREATED:20220930T125101Z
LAST-MODIFIED:20220930T125101Z
UID:10118-1670457600-1670543999@www.m4rd.org
SUMMARY:Advances in renal genetics
DESCRIPTION:Attend this meeting for a comprehensive update on the clinical management of genetic and inherited kidney diseases\, including cystic and basement membrane disorders\, podocytopathies and tubulopathies\, in both children and adults. \nWe will review the evolution of new genomic methodologies\, including how they are informing our knowledge of kidney disease pathogenesis and outcomes\, and their potential impact on patient care in the future. \nAims of the event include: \n\nTo describe recent developments in the management of inherited kidney diseases\nTo consider the present and future impacts of novel genomic approaches in nephrology\nTo explore the development of local and national genetic services in the NHS\n\nBook to attend this event in person or virtually. To view the rates and agenda\, please select your preference below.
URL:https://www.m4rd.org/event/advances-in-renal-genetics/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:Genetics,Royal Society of Medicine
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2022/09/Screenshot-2022-09-30-at-13.45.26.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221126
DTEND;VALUE=DATE:20221127
DTSTAMP:20260530T014046
CREATED:20220609T093342Z
LAST-MODIFIED:20220609T093342Z
UID:9581-1669420800-1669507199@www.m4rd.org
SUMMARY:RAREfest22: Educate\, Engage\, Empower
DESCRIPTION:FREE to attend\, RAREfest22 is a public-facing\, rare disease inspired festival featuring interactive talks\, demos and exhibits\, film and art showcasing ground-breaking science\, visionary technology and pioneering organisations improving lives and bringing hope to those living with rare conditions.\nAn award-winning festival that is as UNIQUE as the patients it champions. Featuring the brightest minds in rare disease research\, the innovators of life-changing tech\, the pioneers in rare disease medicine\, and the patients whose powerful voices must be heard. For the experts. For the curious. For everyone. For FREE. \nCambridge Rare Disease Network 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\, and working together\, the journey toward s better diagnosis\, treatment and support for patients and their families is smoother and more certain. \nBook now
URL:https://www.m4rd.org/event/rarefest22-educate-engage-empower/
LOCATION:The Guildhall\, Market Square\, Cambridge\, CB2 3QB
CATEGORIES:exhibition,Festival,Genetics,Genomics,Networking,Patient advocacy,Rare Diseases
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ORGANIZER;CN="CRDN":MAILTO:jo@camraredisease.org
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20221020T180000
DTEND;TZID=Europe/London:20221020T193000
DTSTAMP:20260530T014046
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:20220613T173000
DTEND;TZID=Europe/London:20220613T183000
DTSTAMP:20260530T014046
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:20211129T173000
DTEND;TZID=Europe/London:20211129T183000
DTSTAMP:20260530T014046
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;VALUE=DATE:20211018
DTEND;VALUE=DATE:20211020
DTSTAMP:20260530T014046
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:20210726T173000
DTEND;TZID=Europe/London:20210726T183000
DTSTAMP:20260530T014046
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:20210708T100000
DTEND;TZID=Europe/London:20210708T120000
DTSTAMP:20260530T014046
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:20210630T093000
DTEND;TZID=Europe/London:20210630T153000
DTSTAMP:20260530T014046
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:20210421T110000
DTEND;TZID=Europe/London:20210421T123000
DTSTAMP:20260530T014046
CREATED:20210416T095021Z
LAST-MODIFIED:20210416T095359Z
UID:7836-1619002800-1619008200@www.m4rd.org
SUMMARY:Ensuring inclusive communications around genetics
DESCRIPTION:Genetics is complex\, and talk of genetics\, and even science\, can turn many people off from engaging with clinicians or self-management of their conditions.\nFindacure is teaming up with charity Breaking Down Barriers to deliver an informative webinar on understanding genetics in the rare disease field. \n  \nThis webinar will:  \n\nHighlight the role of genetics as both a tool to access diagnoses and understanding of rare conditions\, and a barrier to understand and discuss these diseases and their inheritance. \nHighlight case studies of what others in the rare community are doing to support with genetic diagnoses \nSignpost to pre-existing resources that your patient organisation can access
URL:https://www.m4rd.org/event/ensuring-inclusive-communications-around-genetics/
LOCATION:ONLINE
CATEGORIES:Genetics,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/04/Genetics-banner-image3.png
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210416T080000
DTEND;TZID=Europe/London:20210416T170000
DTSTAMP:20260530T014046
CREATED:20210416T094635Z
LAST-MODIFIED:20210416T094635Z
UID:7833-1618560000-1618592400@www.m4rd.org
SUMMARY:East Paediatric Genomics Forum: Drawing Family Histories like a Pro!
DESCRIPTION:Paediatricians and Neonatologists from East of England and East Midlands are invited to join this event to discuss the taking and drawing of family history with a number of ‘patients’/cases presented by the Clinical Genetics Team. \nDuring this session you will: \n\nHear examples of how to take family history\nView a demonstration of drawing a pedigree\nHave the opportunity to ask questions\n\nJoin the meeting here\, note you will be asked to register:
URL:https://www.m4rd.org/event/east-paediatric-genomics-forum-drawing-family-histories-like-a-pro/
CATEGORIES:Genetics,Research,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/04/Untitled-design-6.png
ORGANIZER;CN="East NHS Genomic Laboratory Hub":MAILTO:Laura.Gallwey@addenbrookes.nhs.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200128T180000
DTEND;TZID=Europe/London:20200128T193000
DTSTAMP:20260530T014046
CREATED:20200121T173706Z
LAST-MODIFIED:20200121T195956Z
UID:6194-1580234400-1580239800@www.m4rd.org
SUMMARY:Hit and Miss: Genetic diagnosis\, misdiagnosis and learning
DESCRIPTION:A potpourri of genetic diagnosis\, misdiagnosis and learning experiences\nKCL Medical Genetics Society’s second lecture of the year will held by Dr Willie Reardon\, sharing his experience as a Consultant Clinical Geneticist at Great Ormond St Hospital for Children\, Hospital for Sick Children Toronto and Our Lady’s Children’s Hospital.
URL:https://www.m4rd.org/event/hit-and-miss-genetic-diagnosis-misdiagnosis-and-learning/
LOCATION:Kings College London Guys Campus\, New Hunt's House\, London\, SE1 9RT\, United Kingdom
CATEGORIES:Genetics,Lectures
ORGANIZER;CN="KCL Medical Genetics Society":MAILTO:kclmedgensoc@gmail.com
END:VEVENT
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