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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:20260403T190950
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230719T123000
DTEND;TZID=Europe/London:20230719T150000
DTSTAMP:20260403T190950
CREATED:20230710T103746Z
LAST-MODIFIED:20230710T103746Z
UID:11098-1689769800-1689778800@www.m4rd.org
SUMMARY:Rare @ Manchester - 1st Anniversary Celebration Event
DESCRIPTION:We are thrilled to invite you to this special event to mark the one-year anniversary of the Manchester Rare Conditions Centre. \nThis event will highlight the significant strides Manchester has made in improving the lives of individuals with rare conditions. \nThe aim of this celebration is to showcase the progress the centre has made in the last year\, with speakers from our specialist clinical services\, our research theme and academy. \nFull agenda to be announced. \nDue to limited capacity we encourage you to confirm your attendance as soon as possible.
URL:https://www.m4rd.org/event/rare-manchester-1st-anniversary-celebration-event/
LOCATION:Citylabs 1.0 Nelson Street Manchester M13 9NQ
CATEGORIES:Conference,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2023/07/manchester-rare-conditions-centre.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230720T133000
DTEND;TZID=Europe/London:20230720T180000
DTSTAMP:20260403T190950
CREATED:20230531T133901Z
LAST-MODIFIED:20230531T143336Z
UID:10998-1689859800-1689876000@www.m4rd.org
SUMMARY:Medicine and Me: Young sudden cardiac death
DESCRIPTION:Medicine and Me meetings aim to provide an outline of current best practice and future updates for important conditions. They give a direct voice to patients and carers\, enabling them to discuss their concerns and reflections on the impact of diagnosis\, investigation and management. Physicians\, surgeons and indeed all healthcare professionals continue to learn from and be inspired to improve care by hearing directly from patients. \nIn the UK alone\, 12 seemingly healthy people under the age of 35 die from undiagnosed cardiac conditions every week\, otherwise known as young sudden cardiac death. \nJoin us for an event\, run in association with the charity Cardiac Risk in the Young\, to learn about the latest developments in our understanding of the causes and prevention of young sudden cardiac death\, and how to ensure the best quality of life for those living with diagnosed cardiac conditions. \nParticipants will have the opportunity to hear from some of the world’s leading experts in inherited cardiac conditions and ask questions about their experiences providing support and dealing with affected families. \nAttend this event to gain an understanding of: \n\nThe causes and prevention of young sudden cardiac death\nMethods for early identification of high-risk individuals\nProviding optimal care for patients with diagnosed cardiac conditions\nHow to manage and support affected families\nAreas where further research is needed\n\nGet your tickets here 
URL:https://www.m4rd.org/event/medicine-and-me/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:Conference,M4RD
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230731T170000
DTEND;TZID=Europe/London:20230731T180000
DTSTAMP:20260403T190950
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230906T140000
DTEND;TZID=Europe/London:20230906T160000
DTSTAMP:20260403T190950
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230926T093000
DTEND;TZID=Europe/London:20230926T160000
DTSTAMP:20260403T190950
CREATED:20230713T090812Z
LAST-MODIFIED:20230713T091949Z
UID:11109-1695720600-1695744000@www.m4rd.org
SUMMARY:Breaking Down Barriers
DESCRIPTION:This is the first opportunity for the BDB network to get together in person since lockdown! \n\n 26th September 2023 – London\n\nRegistration will be from 9:45 am\nStart 10:00am\nFinish 4:00pm\nLunch will be provided.\nOur focus is on bringing the network together\, strengthening ties and finding opportunities for collaboration. \nOur keynote speakers (to be announced soon) will introduce key changes in the world of genetic services\, testing and research. \nThe workshops are: \n\nEngaging Excluded Communities.\nWorking together on Patient and Public Involvement and learning from people with lived experience.\nSeizing new opportunities in the genetics field\n\nYou will have an opportunity to explore two of the above. \nThe afternoon will include space for us to explore up to three hot topics or challenges. These will be identified by members in attendance. \nThe workshop will identify challenges for individual member organisations and shared challenges across the network.  We will discuss possible solutions\, ways to collaborate and explore how BDB can support you and your work. \nYou can send up to two members of your team to the event but if you would like more people to attend then please get in touch and we can add you to a waiting list. If there are practical challenges to your participation\, please do give us a call to discuss them. We will do our best to make the events as accessible to the whole membership as possible. Get in touch with Catherine by email catherine.lewis@alstrom.org.uk to reserve your place today.
URL:https://www.m4rd.org/event/breaking-down-barriers/
LOCATION:London
CATEGORIES:Conference
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230930T100000
DTEND;TZID=Europe/London:20230930T170000
DTSTAMP:20260403T190950
CREATED:20230720T092211Z
LAST-MODIFIED:20230720T092423Z
UID:11123-1696068000-1696093200@www.m4rd.org
SUMMARY:WS Conference
DESCRIPTION:You are invited to attend our annual conference on Saturday 30th September 2023\, at Mercure Daventry Court Hotel\, Sedgemoor Way\, Daventry\, NN11 0SG 10.00-17.00 (Registration from 9.00 am). \nYou will have the chance to speak to medical experts from the UK and abroad\, as well as the chance to meet other families/individuals affected by WS.  There will be workshops as well to take part in. This event is open to anyone affected by or with an interest in Wolfram Syndrome. \nFor more information or to book your place(s)\, please go to \nhttp://wolframsyndrome.co.uk/ws-conference/ \nEmail: admin@wolframsyndrome.co.uk \nTelephone: 01903 211358 \nLAST DATE TO BOOK FRIDAY 8TH SEPTEMBER 2023. \nThe Wolfram Syndrome Global Awareness Day is 1st October 2023. WS groups from around the world will be encouraging their communities to take part in fundraising & the raising of awareness for this condition. More information can be found on the website https://www.globalwsday.org/ .
URL:https://www.m4rd.org/event/11123/
LOCATION:Mercure Daventry Court Hotel
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231009
DTEND;VALUE=DATE:20231011
DTSTAMP:20260403T190950
CREATED:20230807T094529Z
LAST-MODIFIED:20230807T094711Z
UID:11200-1696809600-1696982399@www.m4rd.org
SUMMARY:Annual Lafora Disease Science Symposium
DESCRIPTION:Lafora disease researchers and clinicians at Instituto delle Scienze Neurologiche di Bologna (ISNB) IRCCS will host the 8th Annual Lafora Disease Science Symposium in Bologna\, Italy from October 9-10\, 2023. \nChelsea’s Hope is hosting registration. Please register individually to attend the in-person Symposium. If you can’t make it in person\, we encourage you to register and indicate your interest in receiving the recordings after the conference.
URL:https://www.m4rd.org/event/annual-lafora-disease-science-symposium/
LOCATION:Bologna
CATEGORIES:Conference
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20231012T090000
DTEND;TZID=Europe/London:20231012T173000
DTSTAMP:20260403T190950
CREATED:20230628T140925Z
LAST-MODIFIED:20230628T141426Z
UID:11079-1697101200-1697131800@www.m4rd.org
SUMMARY:CamRare's RAREsummit23
DESCRIPTION:A platform for change\nCamRARE’s RAREsummit23 welcomes and unites patients\, advocates\, experts and leaders to address the challenges faced by people affected by rare diseases. By reflecting on progress made\, showcasing best practices and new developments\, sharing knowledge and experience\, and finding ways to work together\, the journey towards better diagnosis\, treatment and support for patients and their families is smoother and more certain.\nOn Thursday 12 October 2023\, we will gather at the Wellcome Genome Campus for our 6th RAREsummit – a flagship CamRARE event gathering 300 great minds in rare diseases to make connections\, exchange ideas and openly debate possibilities. \n“RAREsummit has turned my growing curiosity in Rare Diseases into a reality. I was both able to connect with some amazing people and be inspired by the passion and activity going on throughout this community.”\nThrough RAREsummit23\, we aim: \n\nto raise awareness of rare conditions and their impact\nto showcase exemplars of impactful collaboration between stakeholders\, with patients at the heart\nto bring all stakeholders in rare diseases together as equals 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 by working together with greater efficiency\, collaboration and success\n\nWhy attend? Learn something new\, be inspired\, meet people\, add value\, collaborate.\n\nBuild your network with 300 biotechnology\, pharma and startup leaders\, innovators\, patients and patient group CEOs\, healthcare professionals\, policy-makers\, CROs\, researchers\, investors and students assembled.\nMeet\, mingle and hold crucial discussions with potential partners from local and global arenas.\nTake away practical strategies and fresh ideas.\nParticipate in interactive workshops and Dragon’s Den style tech solutions sessions as an innovator or an audience ‘judge’.\nHear from and put questions to key opinion leaders from the patient\, scientific\, industry\, medical\, and policy sectors.\n\nThemes will include:\n\nProgress in diagnostics – where are we now? What does the future hold? Exploring a broad range of diagnostic tools and strategies\nYoung Voices – have we listened? Does the Rare Disease Framework reflect what young people want and need?\nRare researchers’ poster and pitch – showcasing novel academic and translational research\, the bedrock of better understanding.\nExploring funding challenges and opportunities for this vital research\nCan we fix the everyday challenges of rare patients with technology? In collaboration with Eastern Academic Health Science Network – a live Dragon’s Den Tech solution pitching session.\nTurning the research paradigm on its head. Showcasing patient-led research.\nGene therapies – where are we now and what does the future hold?\nPractical workshops – themes emerging …get in touch if you have a proposal or a wishlist!\nNetworking\, Patient Journey and research poster gallery\, exhibits\n\nBook now!
URL:https://www.m4rd.org/event/camrares-raresummit23/
CATEGORIES:Conference
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2023/06/raresummit23.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231013
DTEND;VALUE=DATE:20231015
DTSTAMP:20260403T190950
CREATED:20230627T145330Z
LAST-MODIFIED:20230627T145330Z
UID:11074-1697155200-1697327999@www.m4rd.org
SUMMARY:The BHD Symposium
DESCRIPTION:We are delighted to be hosting our first hybrid BHD Symposium on 13 and 14 October 2023 in London\, UK\, and online. \nThis is the first time we will be bringing together the whole BHD research community in person since 2015. The event will showcase the current research into BHD and folliculin and we hope it will provide a space for new collaborations to accelerate future research. \nThis year’s symposium is a hybrid event with the aim to reach as many people across the world as possible. You can book tickets to join us either online or in person in London\, UK. \nEmail us with any questions at bhdsymposia@myrovlytistrust.org
URL:https://www.m4rd.org/event/the-bhd-symposium/
LOCATION:Wellcome Collection 183 Euston Road London NW1 2BE
CATEGORIES:Conference
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231103
DTEND;VALUE=DATE:20231104
DTSTAMP:20260403T190950
CREATED:20230627T093656Z
LAST-MODIFIED:20230627T093656Z
UID:11065-1698969600-1699055999@www.m4rd.org
SUMMARY:Glasgow Paediatric Research Day
DESCRIPTION:Colleagues are warmly invited to attend the 2023 Glasgow Paediatric Research Day to be held on Friday 3rd November at the Teaching and Learning Centre\, Queen Elizabeth University Hospital Campus. \nThe programme will feature an invited speakers’ plenary session on “Successes and Challenges of Genomic Medicine”\, hosted by Dr Ruth McGowan\, Consultant Clinical Geneticist\, Royal Hospital for Children\, Glasgow. Abstract submissions on aspects of research in paediatrics / women & children’s health\, are welcomed from undergraduate & postgraduate students\, early career researchers and clinicians and allied health professionals. \nRegistration and Abstraction Submission now open:      Register with eventbrite          Submit an abstract  \nIf you have any queries on this event\, please contact Karen.Cooper@glasgow.ac.uk.
URL:https://www.m4rd.org/event/glasgow-paediatric-research-day/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20231127T090000
DTEND;TZID=Europe/London:20231127T170000
DTSTAMP:20260403T190950
CREATED:20230713T094142Z
LAST-MODIFIED:20230713T094142Z
UID:11114-1701075600-1701104400@www.m4rd.org
SUMMARY:London Rare Disease Showcase 2023
DESCRIPTION:The London Rare Disease Showcase aims to shed light on the latest innovations and advancements occurring in the field of rare diseases\, with special emphasis on the vibrant rare disease landscape in the UK’s capital. \nThrough a series of captivating talks and presentations\, experts and thought leaders from various disciplines will share their insights\, experiences and success stories. \nThis highly anticipated event provides a unique opportunity for attendees to engage in meaningful discussions\, exchange knowledge\, and foster collaborations. \nBy bringing together diverse perspectives and expertise\, we can accelerate progress and find innovative solutions to the challenges faced by the rare disease community. Whether you are a patient\, caregiver\, researcher\, industry professional\, or healthcare provider\, your presence and participation are vital to driving positive change.
URL:https://www.m4rd.org/event/london-rare-disease-showcase-2023/
LOCATION:America Square Conference Centre\, 17 America Square\, London\, EC3N 2LB\, United Kingdom
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240126T140000
DTEND;TZID=Europe/London:20240126T153000
DTSTAMP:20260403T190950
CREATED:20231215T103824Z
LAST-MODIFIED:20231215T103824Z
UID:11389-1706277600-1706283000@www.m4rd.org
SUMMARY:Building NHS healthcare professional awareness resources
DESCRIPTION:Come along to learn more about how your voice can help healthcare professionals learn about rare disease. You will be joined by Kate Tatton-Brown and Alison Pope\, Clinical Directors at NHS England\, as they present the Genomics Education Programme and why it’s important. \nPlease find the link to the zoom webinar here: https://us06web.zoom.us/j/84487083787 \nWe would greatly value your participation and would very much appreciate if you could let us know by Friday 5th January if you accept this invitation. \nIf you have any questions\, please do not hesitate to contact Nadine at nadine@m4rd.org
URL:https://www.m4rd.org/event/building-nhs-healthcare-professional-awareness-resources/
LOCATION:ONLINE
CATEGORIES:M4RD,Webinar
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240213T173000
DTEND;TZID=Europe/London:20240213T210000
DTSTAMP:20260403T190950
CREATED:20231212T101928Z
LAST-MODIFIED:20240115T142640Z
UID:11372-1707845400-1707858000@www.m4rd.org
SUMMARY:First\, do no harm: Expert reflections on a rare bone disease
DESCRIPTION:Medics4RareDiseases and FOP Friends\, in collaboration with the Hunterian Museum at the Royal College of Surgeons of England\, are hosting an evening reception for healthcare professionals\, examining the contributions of patients and families to medical advances in Fibrodysplasia Ossificans Progressiva (FOP). \nCome and find out how patient advocacy can change the course of rare genetic conditions and how basic principles of good clinical care can make all the difference to your rare patients both now and in the future. \nFOP is just one example of a rare genetic bone condition that has been familiar to medicine for hundreds of years but is not familiar to the average healthcare professional because it impacts one in a million people. \nAlso like many rare conditions\, what we do know about FOP is largely thanks to patients and families who have given their time\, stories\, samples and bodies to the pursuit of improving the outlook of those with FOP in the future. \nYou will hear patient stories from the 18th Century to the present day. Talks by people who live with FOP as well as advocates and clinicians who have been pivotal in improving life for those living with FOP today and developing treatments in the future. \nSpeakers include: \n* Chris and Oliver Bedford-Gay – FOP Friends – Rare advocacy in medicine\nChris lives in with his wife Helen and three children\, Oliver (15)\, Leo (14)\, and Harry (11). In 2009 His eldest son\, Oliver\, was diagnosed with the ultra-rare condition Fibrodysplasia Ossificans Progressiva (FOP). After this devastating diagnosis\, Chris founded FOP Friends\, the only UK charity dedicated to FOP\, funding research\, and supporting families. FOP Friends celebrated its 10th year as a charity in 2022. \nAs part of his commitment to the FOP community\, Chris served on the board of the International FOP Association (IFOPA) from 2011 to 2022. He continues to chair the International Presidents’ Council for FOP\, a group which brings together all the national FOP organisations from around the world. He is also involved at Beacon for Rare Diseases as part of the patient group engagement committee and has been in working with MPs in UK Parliament in debates on FOP and Rare Diseases along with discussions with the DHSC. \nCharity work and FOP is\, however\, not Chris’ day-job.  He has run his own software companies for the past 25 years. Chris is also involved in Manchester Round Table and Manchester 41 Club\, charitable-social organisations which run events throughout the year to raise funds to support local charities and good causes.  He also enjoys a range of sports including recently taking up lacrosse.  Chris looks forward to his holidays with his family\, with road-trips around America being his favourite way to spend summers. \n* Professor James Triffitt – Professor Emeritus of Bone Metabolism\, University of Oxford – Discovery and decision making\nProfessor James T. Triffitt’s first degree was in Biochemistry at Liverpool University where he also gained his PhD. He has worked in the USA for two extended periods\, working on calcium metabolism with Professor Bill Neuman at the University of Rochester\, New York and on bone morphogenesis and bone morphogenetic proteins with Professor Marshall Urist at the University of California at Los Angeles. \nHe joined the scientific staff of the Medical Research Council in 1966 and in 1992 he became the Head of the MRC Bone Research Laboratory at the Nuffield Orthopaedic Centre\, Oxford. In 2000 he was awarded the title of Professor of Bone Metabolism following his transfer to a University of Oxford appointment. \nHis most recent research has defined the characteristics of the stem cells of bone and related tissues and the biological factors controlling bone tissue formation and turnover in normal and pathological conditions. He lead a team of scientists developing new methods for improving skeletal healing by stem cell therapy and genetic engineering. His research includes studies on the basic principles for tissue engineering of skeletal tissues and on the changes that occur in bone development and metabolism in common diseases such as osteoporosis and rare diseases such as fibrodysplasia ossificans progressiva (FOP). \n* Lucy Pratt- Patient advocate – Patient leadership in rare disease\n* Professor Richard Keen – Consultant in Rheumatology and Metabolic Bone Disease – RNOH – Looking to the future through research\n*Dawn Kemp – Director of Museums – Royal College of Surgeons of England – The role of the Hunterian Museum in medical education\nAttendees have the opportunity to view the skeletons of two people who lived with FOP\, one in the 18th Century and the other over 230 years later in visits to the Hunterian Museum and RCSEng Anatomy and Pathology Museum. \nDrinks and canapés will be provided.
URL:https://www.m4rd.org/event/first-do-no-harm-expert-reflections-on-a-rare-bone-disease/
LOCATION:hunterian museum
CATEGORIES:Conference,Lectures,M4RD
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240221T120000
DTEND;TZID=Europe/London:20240221T180000
DTSTAMP:20260403T190950
CREATED:20230925T102622Z
LAST-MODIFIED:20240216T113842Z
UID:11299-1708516800-1708538400@www.m4rd.org
SUMMARY:The Unusual Suspects: Rare Disease in Everyday Medicine 2024
DESCRIPTION:The aim of the meeting is to inform doctors that rare diseases are collectively common and relevant to every medical career.  Very different rare diseases face similar challenges\, including navigating healthcare which can be alleviated by a medical profession that understands what living with a rare disease means to a patient and their larger community. \nThe focus for this year’s event will be communication and inclusivity in rare disease. The majority of people living with rare conditions will never receive a disease-modifying treatment or benefit from a specialist service. Often a system built on evidence-based medicine doesn’t work for patients who have little evidence about their condition. This can leave their clinicians feeling helpless and the patient feeling isolated. \nThis session will help participants build on their listening and communication skills for the benefit of people living with untreatable long-term conditions. \nThe speakers confirmed for the event are: \n▪ Dr Lisa Kauffmann\, Consultant community paediatrician & Associate Medical Director at children’s community health services\, Manchester Local Care Organisation\n▪ Jono Lancaster\, Author of ‘Not All Heroes Wear Capes’\n▪ Hope Russell-Winter\, Ambassador for M4RD and Runner-up on The Voice UK\n▪ Kevin Ward\, NHS Healthcare Improvement Scotland WMTY movement\n▪Kerry Leeson\, CEO\, Breaking Down Barriers\n▪Aisha Seedat\, M4RD Patient Ambassador and her sister Saffiya Seedat who is an ardent advocate for individuals with rare diseases\n▪Leisha Devisetti – The winner of the Student Voice Prize 2023
URL:https://www.m4rd.org/event/the-unusual-suspects-rare-disease-in-everyday-medicine-3/
LOCATION:The Royal Society of Medicine
CATEGORIES:Royal Society of Medicine,Student Voice Prize
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/09/INSTAGRAM_POST_START_M4RD_UNUSUAL_SUSPECTS_2024_1080px_START_THE_COUNTDOWN.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240313T190000
DTEND;TZID=Europe/London:20240313T203000
DTSTAMP:20260403T190950
CREATED:20240215T103859Z
LAST-MODIFIED:20240215T103859Z
UID:11490-1710356400-1710361800@www.m4rd.org
SUMMARY:Beyond the Student Voice Prize
DESCRIPTION:Join us to celebrate the end of another highly successful Student Voice Prize. \nThis year’s competition saw more entries than ever before from 30 different universities across 18 countries. We are so grateful to the students and patient groups who contributed to this success. \nThis event is an opportunity for us to share these achievements and showcase some inspiring case studies. We will also highlight opportunities for students to continue their involvement in rare diseases going forward. \nWe hope that for many students this competition has marked the beginning of a continued interest in rare diseases that could span their career and make a real difference to the lives of people living with rare conditions. \n\n\nWho is this event for?\n\n\n\n\n\nMedical and science students who have entered The Student Voice Prize in the past or would be interested to in the future\nMedical and science students interested in learning more about rare conditions and getting involved in the community\nRare disease patient group leaders interested in SVP\, even if you haven’t been involved in the past\n\n\n\n\nDuring this event you will:\n\n\n\n\n\nHear stories from rare disease patients and advocates\nConnect with students and the rare disease community\nHear from 2023 competition winners\nLearn about opportunities to get involved with rare diseases going forward\n\nSpaces are limited\, don’t wait to claim your free ticket!
URL:https://www.m4rd.org/event/beyond-the-student-voice-prize/
LOCATION:ONLINE
CATEGORIES:Conference,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2024/02/Beyond-SVP-graphic-1.jpg
ORGANIZER;CN="Rare Beacon":MAILTO:eleanor@m4rd.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240504T093000
DTEND;TZID=Europe/London:20240504T160000
DTSTAMP:20260403T190950
CREATED:20240502T095810Z
LAST-MODIFIED:20240502T100012Z
UID:12130-1714815000-1714838400@www.m4rd.org
SUMMARY:Galactic Genomes: Exploring the Universe of Rare Diseases
DESCRIPTION:“May the fourth be with you!” Cambridge University Rare Disease Society and Cambridge University Genomic Medicine Society are co-hosting a stellar event in Cambridge on Saturday 4 May. \nThe day will feature talks from leading researchers\, rare disease patient voices and representation from more than 15 rare disease organisations\, as well as presentations from a research poster competition. Tea\, coffee and lunch will be provided. \nThe event is free to attend with a £5 deposit\, which will be reimbursed on the day with the completion of a feedback form. \nFor full details of the day and to book your place\, please visit the event page.
URL:https://www.m4rd.org/event/12130/
LOCATION:Cambridge University
CATEGORIES:M4RD
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2024/05/original-5834B718-3E3F-4C41-9AEB-7A7C35BCAE5C.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240515T080000
DTEND;TZID=Europe/London:20240516T170000
DTSTAMP:20260403T190950
CREATED:20240202T124604Z
LAST-MODIFIED:20240202T124658Z
UID:11475-1715760000-1715878800@www.m4rd.org
SUMMARY:ECRD 2024
DESCRIPTION:The 12th European Conference on Rare Diseases & Orphan Products (ECRD) is recognised globally as the largest\, patient-led\, rare disease policy-shaping event in which collaborative dialogue\, learning and conversation takes place\, forming the groundwork to shape goal-driven rare disease policies and allow for important and innovative discussions on a national and an international level to take place. \nLeading\, inspiring and engaging all stakeholders to take action\, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with over 1000 stakeholders in the rare disease community – patient advocates\, policy makers\, researchers\, clinicians\, healthcare\nprofessionals\, healthcare industry representatives\, academics\, payers\, regulators and Member State representatives. \nWith the European elections approaching\, at the inception of a new term for the European Parliament and the European Commission\, the 12th ECRD becomes a key driver in shaping policies to address the unique needs of people with rare diseases and their families over the next\nfive years. \nThe ECRD’s value is underscored by its alignment with EURORDIS’ priorities for the EU elections\, evident in its comprehensive six-session agenda.\nWhat sets the ECRD apart is its integration into broader rare disease policy and healthcare ecosystem efforts. Rooted in the recommendations of the Rare 2030 Foresight Study\, the ECRD continues to build on this comprehensive review of the strategy for rare diseases and shape the thinking of policymakers and the community\, encouraging a more streamlined and proactive approach to addressing the unmet needs of people living with rare diseases and the persisting inequalities across Europe. \nSave the Date: 15 – 16 May 2024\, online and at The Square venue in Brussels
URL:https://www.m4rd.org/event/11475/
LOCATION:The Square Venue\, Brussels
CATEGORIES:Conference
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2024/02/Twitt.Linkd_.Faceb_Network-with-your-peers.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20240925T193000
DTEND;TZID=Europe/London:20240925T210000
DTSTAMP:20260403T190950
CREATED:20240918T142346Z
LAST-MODIFIED:20240918T142346Z
UID:12280-1727292600-1727298000@www.m4rd.org
SUMMARY:Misdiagnosis and surgical uncertainty - A patient's perspective
DESCRIPTION:Charlotte Cuffe is a CAUK member and her patient story was recently featured in a prestigious global essay competition after she was interviewed by 5th Year Medical Student\, Iman Muzafar. Join us to hear Charlotte and Iman in conversation about misdiagnosis and surgical uncertainty. To read Iman’s award-winning essay published in Springer Nature go to https://communities.springernature.com/posts/student-voice-prize-runner-up \nThis is the registration link for the event: https://us06web.zoom.us/webinar/register/WN_GNz8TK1lQN-wUqrXDtaXKQ#/registration
URL:https://www.m4rd.org/event/misdiagnosis-and-surgical-uncertainty-a-patients-perspective/
CATEGORIES:Conference,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2024/09/931F0965-B30B-406B-B97C-15748E6C9570.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20241122T080000
DTEND;TZID=Europe/London:20241123T170000
DTSTAMP:20260403T190950
CREATED:20241021T081811Z
LAST-MODIFIED:20241021T081811Z
UID:12381-1732262400-1732381200@www.m4rd.org
SUMMARY:Rare Fest 2024
DESCRIPTION:RAREfest24 \nA festival as unique as you are. For curious minds of all ages\, for FREE.\nFri 22 November – Launch Evening ‘Strictly Rare’\nAn evening of music\, performance\, comedy\, talks and innovative research inspired art to challenge perceptions\, dispel myths and imagine the possible. \nSat 23 November – Interactive Exhibition\nImmerse yourself in a bustling marketplace of hands-on exhibits\, interactive talks\, films\, and stunning research-inspired art.  Discover the latest in innovative science and technology and meet leading researchers\, tech start-ups\, treatment pioneers and individuals with rare conditions. Educational fun for the whole family.
URL:https://www.m4rd.org/event/rare-fest-2024/
CATEGORIES:Conference,exhibition
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2024/10/camrare.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20241122T110000
DTEND;TZID=Europe/London:20241122T123000
DTSTAMP:20260403T190950
CREATED:20240918T130931Z
LAST-MODIFIED:20240918T131117Z
UID:12275-1732273200-1732278600@www.m4rd.org
SUMMARY:Haematology
DESCRIPTION:Alongside the British Society for Haematology this session will discuss management of sickle cell disease and the appropriate use of blood components. It will also explore diagnostic work up for suspected haematological malignancy and investigate thrombocytopenia.
URL:https://www.m4rd.org/event/haematology/
CATEGORIES:Conference
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2024/09/General-Med-asset.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250223T093000
DTEND;TZID=Europe/London:20250223T170000
DTSTAMP:20260403T190950
CREATED:20250128T104648Z
LAST-MODIFIED:20250128T104648Z
UID:12784-1740303000-1740330000@www.m4rd.org
SUMMARY:Connecting the Dots: Oxford University Student Rare Disease Conference 2025
DESCRIPTION:The Oxford Rare Disease Society (OxRare) and the Sherrington Society are excited to welcome you to “Connecting the Dots” – our first Oxford University Student Rare Disease Conference\, taking place Sunday 23rd February\, 9:30–17:00 at Magdalen College\, Oxford. We’re supported by Medics for Rare Disease and our kind sponsors. \nJoin us for this exciting opportunity to hear from expert speakers at the frontiers of genomics and medical research\, amplify Rare Disease patient voices\, forge new collaborations\, and learn how we can make a positive difference as the doctors and science professionals of tomorrow. \nCall for posters! Students and early career researchers are invited to submit a poster presentation\, with chance to win prizes! Submit your abstracts here: https://forms.gle/D7VBjtYKbQagQmk97 \nIn-person ticket includes FREE tea\, coffee\, delicious lunch and networking drinks. We just ask that you complete the feedback form to receive your Certificate of Attendance and part-reimbursement of the ticket cost. The event is FREE to attend for individuals with lived experience of rare disease. \nNB: Livestream tickets are intended for those joining virtually from outside of Oxford. Those in Oxford are highly encouraged to attend in person to enjoy free refreshments and the opportunity to speak to Rare Disease patient representatives. \nAny questions you can email Linda/Kevin at oxfordrarediseasesoc@gmail.com or Cat/Jake at magdsherringtonsociety@gmail.com. \nGetting here: \nThe closest entry to the Grove Auditorium is through the entrance on Longwall Street (step-free access). Alternatively\, if you enter via the Porters’ Lodge on the main High Street (non step-free)\, they can help to direct you to the Auditorium.\nBy Public Transport: From Oxford Railway Station\, Magdalen College is ~20 min walk\, ~20 min by bus\, and 10 min by taxi. The nearest bus stop for the college is High Street (2 min walk)\, served by buses from the Railway station and by the Oxford Tube.\nBy Car: You may wish to use one of the Park & Rides. The fare includes parking for 16 hours and bus travel into Oxford City Centre https://www.oxford.gov.uk/park-ride
URL:https://www.m4rd.org/event/connecting-the-dots-oxford-university-student-rare-disease-conference-2025/
LOCATION:Magdalen College\, University of Oxford
CATEGORIES:Conference,M4RD
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2025/01/connecting-the-dots.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250225T190000
DTEND;TZID=Europe/London:20250225T210000
DTSTAMP:20260403T190950
CREATED:20250121T164111Z
LAST-MODIFIED:20250123T111643Z
UID:12739-1740510000-1740517200@www.m4rd.org
SUMMARY:Rare Disease 101 for Rare Disease Day 2025!
DESCRIPTION:Medics for Rare Disease: Rare Disease 101 for Rare Disease Day 2025! \nJoin us this Rare Disease Day for an engaging and impactful Rare Disease 101 online training session\, reimagined with updated content and a fresh new look ✨. \nRare disease affects 350 million people worldwide\, yet remains underrepresented in medical education. This session is designed to bridge that gap by approaching rare disease as a single discipline\, highlighting the common challenges experienced by impacted people and discussing how to make a difference 💡. \nWhy attend? \n🧠 Gain insights into the fundamentals of rare disease and learn how every healthcare professional can make a difference.\n💬 Hear from the winner of the Student Voice Prize 2024 – more details to be revealed!\n👂 Listen to powerful reflections from a lived-experience advocate\, offering invaluable understanding of what it’s like to navigate the healthcare system with a rare condition. \nThis session is perfect for doctors\, nurses\, and other healthcare professionals\, but it’s open to everyone worldwide\, so don’t miss the opportunity to expand your knowledge and be part of the global conversation on rare disease. 🌍 \n➡️ Secure your spot today! The first 25 sign-ups will receive a NEW rebranded Medics for Rare Disease pin badge – perfect for showing others that you’re Rare Aware! \nMedics for Rare Disease understands that some people may experience barriers to paid attendance. We have therefore reserved a number of FREE general admission tickets. Email helen@m4rd.org to receive the relevant promo code. \nFind out more about Medics for Rare Disease at m4rd.org and take our free e-learning modules at learn.m4rd.org! 🎓
URL:https://www.m4rd.org/event/rare-disease-101-for-rare-disease-day-2025/
LOCATION:ONLINE
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/01/25th-Feb-2025-7pm.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250228
DTEND;VALUE=DATE:20250301
DTSTAMP:20260403T190950
CREATED:20250122T102638Z
LAST-MODIFIED:20250122T102638Z
UID:12753-1740700800-1740787199@www.m4rd.org
SUMMARY:#ShowYourStripes for Rare Disease Day 2025
DESCRIPTION:Calling all healthcare professionals… dig out your stripey socks and get ready to ‘show your stripes’ as we approach Rare Disease Day on 28th February. Medics for Rare Disease is asking clinicians\, allied healthcare professionals and healthcare students to join forces\, to help drive rare disease awareness in the run up to the big day! \nStripey socks and selfies \nGetting involved is easy. Just wear some stripey socks and post a selfie on Instagram or LinkedIn with the hashtag #ShowYourStripes and tag @MedicsForRare. All tagged photos will be uploaded to an online gallery that will remain a visual show of support to those people living with rare conditions. Not on social media? No problem\, just email your pictures to hello@m4rd.org. \nShow off those stripes all week! \nFriday 28th is Rare Disease Day but we encourage you to show your stripes on whatever shifts you may be working that week\, from Monday 24th February! Team pictures and creative selfies are welcome and there will be awards for the most impressive images. For inspiration\, check out last year’s gallery here. \nAwareness is Key \nRare diseases are individually rare but collectively common\, affecting 3.5 million people in the UK. Patients with rare disease face similar challenges\, waiting an average of 5 years to reach diagnosis. Raising healthcare professional awareness about rare disease is key to a timely diagnosis and better outcomes.  \nWhy the stripes? \nThe zebra was adopted as a symbol of the rare disease community. This is thanks to the now archaic medical adage ‘when you hear hooves\, think horse not zebra’\, that still impacts clinical decision-making today. \nShow your support\, #ShowYourStripes!
URL:https://www.m4rd.org/event/showyourstripes-for-rare-disease-day-2025/
LOCATION:ONLINE
CATEGORIES:M4RD,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/01/Untitled-1920-x-1080-px-3.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250228T120000
DTEND;TZID=Europe/London:20250228T143000
DTSTAMP:20260403T190950
CREATED:20250224T132103Z
LAST-MODIFIED:20250224T132103Z
UID:12855-1740744000-1740753000@www.m4rd.org
SUMMARY:More Than You Can Imagine: Genomics and Rare Disease
DESCRIPTION:Join Central and South Genomics for an insightful webinar in recognition of Rare Disease Day\, where we bring together patients\, healthcare professionals\, and researchers to explore the latest in patient advocacy\, genomics and rare disease. This event is for everyone\, whether you’re from a healthcare background\, have been affected by a rare disease\, or are just keen to learn more. \nThis session will cover key topics\, including: \nUnderstanding rare diseases and genomics – How advances in genetics are shaping diagnosis and treatment.\nEquity & diversity in research – Addressing challenges in representation and access to care.\nPatient experiences – Real-life stories that highlight the journey from diagnosis to treatment.\nNewborn research & pharmacogenomics – The future of personalised medicine.\nSupport networks & advocacy – Connecting patients with resources for ongoing care.\nWe’ll hear from a range of experts\, from clinicians to charity representatives and patient advocates. To view the full agenda\, please click here.  \nIf you have any queries\, please don’t hesitate to get in touch. We look forward to seeing you on 28 February.
URL:https://www.m4rd.org/event/more-than-you-can-imagine-genomics-and-rare-disease/
LOCATION:ONLINE
CATEGORIES:Conference
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/02/Screenshot-2025-02-24-at-13.13.59.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250228T160000
DTEND;TZID=Europe/London:20250228T180000
DTSTAMP:20260403T190950
CREATED:20250220T114533Z
LAST-MODIFIED:20250220T114703Z
UID:12838-1740758400-1740765600@www.m4rd.org
SUMMARY:Spotlight on the Unseen
DESCRIPTION:Join us on Friday\, 28th February\, from 16:00–18:00 at Formby Room\, Cedar House\, University of Liverpool. \nThis seminar is an exciting opportunity to learn from an expert speaker\, hear powerful patient stories\, and explore the crucial role of rare disease awareness in medical education. Refreshments will be provided! \nProgramme Highlights\nRare 101 – An introduction to rare disease\n“Sickle Cell stopped me from studying medicine” – Experience shared by Alicia\n“Living with Chiari Malformation & Syringomyelia” – Insights from Charlotte \nWhy Attend?\nEnhance your clinical knowledge and become Rare Aware! Rare diseases are individually rare but collectively common and share common challenges. Learn about the common themes in the patient experience and how to best support people before\, during and after diagnosis.\nLearn directly from lived experience advocates and connect with Rare Aware peers – Network with others who are passionate about improving rare disease education and care.\nNab some free Medics for Rare Socks – don’t forget to share a picture on social media and tag @MedicsForRare\nReceive a certificate of attendance – just complete our short feedback survey! \nGetting here:\nThe Formby Room\, Cedar House is located within the University of Liverpool’s medical school on Ashton St\, Liverpool L69 3GE. The room is on the ground floor\, ensuring easy access for all attendees.\nBy Public Transport: Cedar House is easily accessible via Liverpool Lime Street Station (~15 min walk) and by various bus routes.\nBy Car: Limited parking is available on campus\, and nearby public parking options can be found. \nFor any questions\, feel free to reach out to Himani hlhsehgal@liverpool.ac.uk or Princess hlpbello@liverpool.ac.uk \n#DareToThinkRare #ShowYourStripes @MedicsForRare
URL:https://www.m4rd.org/event/spotlight-on-the-unseen/
LOCATION:University of Liverpool
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/02/Screenshot-2025-02-20-at-11.46.17.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250308T100000
DTEND;TZID=Europe/London:20250308T183000
DTSTAMP:20260403T190950
CREATED:20250214T112342Z
LAST-MODIFIED:20250214T112342Z
UID:12827-1741428000-1741458600@www.m4rd.org
SUMMARY:Swansea Rare Disease Study Day
DESCRIPTION:Dive deep into the world of rare diseases at the first Swansea Rare Disease Study Day on 8th March 2025! \nWhy attend? \nGain invaluable insights from our expert guest speakers.\nLearn from our engaging panel discussions.\nMeet a range of local patient advocacy groups to discover more about the lived reality of those impacted by rare conditions.\nNetwork with others rare disease allies.\nEnjoy a tasty lunch from Sue Franks catering. \nCall for oral and poster presentations \nMedical students and foundation doctors are invited to submit abstracts for oral presentations\, and medical students and resident doctors of all grades for poster presentations. Cash prizes are up for grabs! Find out more and submit your abstract here https://forms.gle/pFhybxbJo1XbPU5U9 by 31st January 2025. \nDon’t miss this opportunity to expand your horizons and become #RareAware!
URL:https://www.m4rd.org/event/swansea-rare-disease-study-day/
LOCATION:Morriston Hospital Education Centre\, Heol Maes Eglwys Treforys SA6 6NL
CATEGORIES:Conference,Lectures
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/02/Screenshot-2025-02-14-at-11.22.50.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250516T140000
DTEND;TZID=Europe/London:20250516T160000
DTSTAMP:20260403T190950
CREATED:20250220T115835Z
LAST-MODIFIED:20250220T115835Z
UID:12845-1747404000-1747411200@www.m4rd.org
SUMMARY:Soft UK Healthcare Professionals Seminar
DESCRIPTION:SOFT UK invites healthcare professionals to a transformative seminar focused on the power of language in supporting families navigating rare genetic diagnoses and ongoing care. This event offers a unique blend of expert insights and heartfelt personal stories\, equipping attendees with practical tools to foster meaningful and compassionate dialogue. \nBy attending\, you will: \nDevelop your understanding of the impact of language upon parents and families facing diagnosis of rare genetic and life limiting conditions\nEngage in face-to-face networking with trisomy family members\, gaining first hand perspectives\nDiscover actionable strategies through real-life narratives to enhance communication during diagnosis and throughout ongoing care\nAt the end of the event we invite you to join us at a Rewards and Recognition dinner\, where you can learn more about the work of SOFT UK and those who support us.
URL:https://www.m4rd.org/event/soft-uk-healthcare-professionals-seminar/
LOCATION:Holiday Inn\, Birmingham
CATEGORIES:Conference,Lectures
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2025/02/5511D77B-A5AB-4674-9B8E-8A34B8219CC4.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250612T120000
DTEND;TZID=Europe/London:20250612T140000
DTSTAMP:20260403T190950
CREATED:20250604T153842Z
LAST-MODIFIED:20250604T153842Z
UID:13534-1749729600-1749736800@www.m4rd.org
SUMMARY:Genomics in Primary Care: What GPs need to know
DESCRIPTION:Genomic medicine has a significant impact within the field of primary care. Generally acting as the gateway to the NHS and specialised services\, primary care practitioners are crucial in the early identification of genetic conditions and in ensuring appropriate management of a range of conditions. \nGenomics features in everyday primary care practice in a range of ways: \n* Rare diseases are individually rare but collectively affect 1:17 families. GPs may have a caseload with a number of patients with the same rare disease within a family.\n* Most care for patients with genetic conditions is provided in the community. A patient’s genetic condition might influence your choice of commonly prescribed medications such as HRT or contraceptives.\n* Some common conditions have genetic susceptibility. Clinical Genetics only see the patients that GPs refer to them. As a GP you are in a unique position to suspect these diagnoses early and refer appropriately.\n* Patients with inherited cancer predisposition syndromes need regular screening to find cancer early and improve prognosis. You can encourage them to attend for this.\n* GPs can give preconception advice for families with known genetic conditions and encourage relatives to be tested to benefit from additional screening/treatment.\n* Genes influence the way that our bodies process medication. As more research emerges\, genetics is likely to influence our approach to prescribing in the future. This is already being seen in the prescription of clopidogrel to patients who have had a stroke. \nIn this informative webinar\, we’ll hear from a range of experts – from patients through to healthcare professionals – to examine the application of genomics within primary care and how it relates to your role.  \nRegister now to secure your place here\, and don’t hesitate to get in touch if you have any questions.
URL:https://www.m4rd.org/event/genomics-in-primary-care-what-gps-need-to-know/
LOCATION:ONLINE
CATEGORIES:clinical,Conference,Genomics,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/06/Screenshot-2025-06-04-at-16.38.02.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250623T093000
DTEND;TZID=Europe/London:20250623T160000
DTSTAMP:20260403T190950
CREATED:20250529T090035Z
LAST-MODIFIED:20250602T105336Z
UID:13516-1750671000-1750694400@www.m4rd.org
SUMMARY:Recommendation Writing Workshop
DESCRIPTION:Monday 23rd June 9.30 – 4pm at Edgbaston Park Hotel. LIMITED PLACES – reserve your spot now!\nWelcome to the IAG2 Face to Face Meeting!\nMedics for Rare Disease has a vision of healthcare equity for everyone. We have been working with the Department of Health and Social Care since 2018 in order to achieve our mission. \nOn 23rd June we are hosting a workshop in order to develop recommendations for the DoHSC about ‘healthcare professional awareness of rare disease’. \nWe will be asking…\nWhat is healthcare professional awareness?\nHow do we implement it throughout the NHS?\nHow do we measure it? \nIf you have practical ideas and suggestions that could inform these recommendations\, WE WANT YOU to join us on the day. \nWho do we want to attend:\nPeople who have practical ideas\nPeople who have experience of driving system change\nPeople who have experience developing services in the NHS\nPeople with experience designing and implementing e.g. Dementia Friendly Hospitals\nHealthcare professionals\, people who work in the NHS and advocates alike!\nThis project (‘IAG2’) is being run by Medics for Rare Disease and Emotive with support from collaborators on the UK Rare Diseases Framework Forum and has been approved by The Department of Health and Social Care. \nKeep in mind:\nWe are not responsible for implementing the recommendations\nThis will not be a forum for exploring single individual’s experiences\nThis will not be a forum for raising concerns or complaints about single cases of care \nMedics for Rare Disease – www.m4rd.org\nEmotive – https://emotiveagency.com \nReserve your place here
URL:https://www.m4rd.org/event/recommendation-writing-workshop/
LOCATION:Edgbaston Park Hotel
CATEGORIES:Conference,Rare Diseases
ATTACH;FMTTYPE=image/avif:https://www.m4rd.org/wp-content/uploads/2025/05/workshop-1.avif
END:VEVENT
END:VCALENDAR