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X-WR-CALDESC:Events for Medics For Rare Disease
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DTSTART;TZID=Europe/London:20260313T093000
DTEND;TZID=Europe/London:20260313T160000
DTSTAMP:20260501T145303
CREATED:20260306T092156Z
LAST-MODIFIED:20260306T092156Z
UID:14885-1773394200-1773417600@www.m4rd.org
SUMMARY:Rare Disease\, NF1 and Primary Care: Research Workshop
DESCRIPTION:Building collaborations to advance rare disease research in primary care \nAre you a primary care academic\, clinician with an interest in rare diseases\, rare-disease researcher\, or an industry partner curious about the future of primary care research in rare conditions? \nIf so\, this interactive research development workshop is for you. \nThis NW RDN NIHR-funded workshop will bring together stakeholders from across primary care\, secondary care\, academia\, patient-focused research\, and industry to explore how primary care can better support people living with rare diseases\, using neurofibromatosis type 1 (NF1) as an exemplar condition. \nThe session will explore:\n* the role of primary care in early recognition and diagnosis\n* diagnostic pathways and longitudinal management\n* coordination across services\n* opportunities to use routinely collected data and digital health tools to strengthen care \nBy identifying key evidence gaps and priority research questions\, the workshop aims to develop a collaborative\, patient-centred research agenda grounded in everyday primary-care practice. \nJoin us to connect\, set research priorities\, and shape collaborative studies that improve outcomes for people living with rare diseases.
URL:https://www.m4rd.org/event/rare-disease-nf1-and-primary-care-research-workshop/
LOCATION:Engine Rooms\, Birchwood Park\, Warrington\, Cheshire\, WA36 YNI
CATEGORIES:clinical,General Practice,HCPs,Lunch & learn,Public health,Rare Diseases,Research,workshop
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/03/Screenshot-2026-03-06-at-09.18.32.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260226T140000
DTEND;TZID=Europe/London:20260226T153000
DTSTAMP:20260501T145303
CREATED:20260206T101350Z
LAST-MODIFIED:20260206T101350Z
UID:14789-1772114400-1772119800@www.m4rd.org
SUMMARY:When to Suspect a Rare Disease in Any Practice Setting
DESCRIPTION:Join Medscape for a live educational session\, ‘When to Suspect a Rare Disease in Any Practice Setting’\, featuring our very own CEO Lucy McKay.  \nThis live-streamed event will take place on February 26\, 2026\, at 2 PM GMT / 3 PM CET and will explore practical insights to help clinicians recognize when a rare disease may be at play across diverse clinical settings.  \nThe event will be hosted live on Medscape’s social media platforms—no registration is required. Simply follow @Medscape to watch once the event goes live.
URL:https://www.m4rd.org/event/when-to-suspect-a-rare-disease-in-any-practice-setting/
LOCATION:LIVE STREAM
CATEGORIES:clinical,General Practice,Global Health,HCPs,Lectures,Medical Students,Public Engagement,Public health,Rare Disease
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/02/ME0152025_SocialAd-1.png
ORGANIZER;CN="Medscape Education Global":MAILTO:aduncan@webmd.net
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250612T120000
DTEND;TZID=Europe/London:20250612T140000
DTSTAMP:20260501T145303
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:20211208T190000
DTEND;TZID=Europe/London:20211208T203000
DTSTAMP:20260501T145303
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:20211130T190000
DTEND;TZID=Europe/London:20211130T203000
DTSTAMP:20260501T145303
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;VALUE=DATE:20211117
DTEND;VALUE=DATE:20211119
DTSTAMP:20260501T145303
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:20211101T120000
DTEND;TZID=Europe/London:20211101T124500
DTSTAMP:20260501T145303
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
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