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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260226T140000
DTEND;TZID=Europe/London:20260226T153000
DTSTAMP:20260509T125811
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:20260211T193000
DTEND;TZID=Europe/London:20260211T203000
DTSTAMP:20260509T125811
CREATED:20260109T151523Z
LAST-MODIFIED:20260114T114418Z
UID:14372-1770838200-1770841800@www.m4rd.org
SUMMARY:Rarely Taught: Reflections on Rare Disease Training Globally
DESCRIPTION:Connect with healthcare professionals and students from around the world for a dynamic discussion on rare disease medical training across global contexts. \nAs part of this interactive session\, we’ll also deliver a FLASH Rare Disease 101 training showcasing our updated e-learning course – giving you the opportunity to #LearnYourStripes ahead of Rare Disease Day 2026. \n📅 Event Details\nDate & Time: 11 February 2026\, 19:30–20:30 GMT\nLocation: 💻 Online via Zoom\n👉 Register via Eventbrite and receive the Zoom link shortly before the event \n🌐 What to Expect\nA concise\, high-impact Rare Disease 101 teaching session\nA shared conversation on learning needs\, challenges and opportunities in rare disease medical training\nOpportunities to connect with peers worldwide \n🎟️ Who should attend?\nOpen to healthcare professionals and students globally. FREE to attend with optional £10 donation. \nWhether you’re looking to expand your knowledge\, gain a global perspective\, or connect with like-minded colleagues\, this event is the perfect way to kick-start your Rare Disease Day 2026 learning. \n📌 Save the date and register now!
URL:https://www.m4rd.org/event/save-the-date-global-rare-disease-101-online-event/
LOCATION:ONLINE
CATEGORIES:Conferences / Workshops,Global Health,HCPs,Lectures,Medical Students,Rare Disease,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/01/E885C233-D7D5-48E3-A930-B83A15A3A332.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251103T130000
DTEND;TZID=Europe/London:20251103T140000
DTSTAMP:20260509T125811
CREATED:20251017T132431Z
LAST-MODIFIED:20251023T213702Z
UID:13753-1762174800-1762178400@www.m4rd.org
SUMMARY:King's Health Partners Rare Disease Grand Round: Hepatobiliary disease
DESCRIPTION:Join the upcoming Rare Disease Grand Round\, hosted by the King’s Health Partners Rare Disease Network—bringing together researchers and clinicians across the region to foster collaboration\, share insights\, and advance rare disease research. \nThis session will focus on hepatobiliary disease\, featuring expert talks on cutting-edge research: \nMind over MASLD: Unravelling brain dysfunction in steatotic liver disease – Dr Anna Hadjihambi\, Group Lead\, UKRI Future Leaders Fellow\, King’s College London \nPresentation by Prof Philip Newsome\, Professor of Hepatology and Director of The Roger Williams Institute of Liver Studies – title to be announced \nThe event will be chaired by Dr Cristina Dias\, Chair of the KHP Rare Disease Network\, Clinical Reader in Genomics and Neurodevelopment at King’s College London\, and Consultant in Clinical Genetics and Genomics at Guy’s and St Thomas’ NHS Foundation Trust. \nWhy attend? Connect with the King’s Health Partners research and clinical community\, hear from leading experts\, and explore the latest developments in rare disease research. \nRecording available later on the KHP Learning Hub.
URL:https://www.m4rd.org/event/kings-health-partners-rare-disease-grand-round-hepatobiliary-disease/
LOCATION:ONLINE
CATEGORIES:Genomics,HCPs,Lectures,Rare Diseases,Research,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/10/KHP.png
ORGANIZER;CN="King's Health Partners":MAILTO:jennifer.1.burt@kcl.ac.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250516T140000
DTEND;TZID=Europe/London:20250516T160000
DTSTAMP:20260509T125811
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:20250308T100000
DTEND;TZID=Europe/London:20250308T183000
DTSTAMP:20260509T125811
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:20240213T173000
DTEND;TZID=Europe/London:20240213T210000
DTSTAMP:20260509T125811
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
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2023/12/CB5B33DC-6D68-40D8-A590-B1A0E523C02D-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230306T180000
DTEND;TZID=Europe/London:20230306T193000
DTSTAMP:20260509T125811
CREATED:20230206T113734Z
LAST-MODIFIED:20230206T114132Z
UID:10437-1678125600-1678131000@www.m4rd.org
SUMMARY:Reframing Rare Disease
DESCRIPTION:It may be impossible for all doctors to have knowledge of more than 7\,000 recognised rare diseases. However\, it is feasible for all future and current medical professionals to learn when to suspect a rare disease\, to appreciate that rare diseases are collectively common and to recognise the exceptional challenges faced by those affected. \nAt this FREE event\, you can expect to learn about rare disease from those with lived experience and from those working in this area in healthcare. Join Medics 4 Rare Diseases (M4RD) and the Clare College Medical and Veterinary Society in equipping medical students and doctors with the knowledge and tools they need to #DareToThinkRare. \nPerfect for medical professionals and students wanting to learn more about and get involved in Rare Diseases. \nBook Now 
URL:https://www.m4rd.org/event/reframing-rare-disease/
LOCATION:Clare College Medical and Veterinary Society
CATEGORIES:Conference,Lectures,M4RD,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/02/Cambridge-Twitter-Post.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220714
DTEND;VALUE=DATE:20220715
DTSTAMP:20260509T125811
CREATED:20220630T103933Z
LAST-MODIFIED:20220630T103933Z
UID:9705-1657756800-1657843199@www.m4rd.org
SUMMARY:Showcase of Genomics across North Thames
DESCRIPTION:Join the North Thames Genomic Medicine Service showcase to find out how genomic medicine is transforming healthcare in their region. \nGenomic medicine is coming into every-day-practice for multi-disciplinary healthcare professionals across the NHS\, improving how we diagnose and treat patients of all ages with cancer and rare or inherited diseases.\nIn North London\, Essex and Hertfordshire\, the North Thames Genomic Medicine Service is delivering new genomic tests and redesigning pathways with clinical services to bring the benefits of genomics to patients across the region. \nIn this one day showcase you can find out how genomic medicine is changing healthcare in the region\, and hear about the new pathways now in place across many services.
URL:https://www.m4rd.org/event/showcase-of-genomics-across-north-thames/
LOCATION:UCL\, Gower Street\, London\, WC1E 6XA\, United Kingdom
CATEGORIES:Genomics,Lectures
ATTACH;FMTTYPE=image/webp:https://www.m4rd.org/wp-content/uploads/2022/06/https-cdn.evbuc_.com-images-286166509-349767685317-1-original.20220517-130451.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220627
DTEND;VALUE=DATE:20220702
DTSTAMP:20260509T125811
CREATED:20220315T114405Z
LAST-MODIFIED:20220315T114405Z
UID:9161-1656288000-1656719999@www.m4rd.org
SUMMARY:11th European Conference on Rare Disease & Orphan Products (ECRD)
DESCRIPTION:The European Conference on Rare Diseases & Orphan Products (ECRD) is recognised globally as the largest\, patient-led rare disease 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. \nECRD 2022 will take place online on 27 June -1 July. \nLeading\, inspiring and engaging all stakeholders to take action\, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with over 1500 stakeholders in the rare disease community – patient advocates\, policy makers\, researchers\, clinicians\, healthcare professionals\, healthcare industry representatives\, academics\, payers\, regulators and Member State representatives. \nThis 11th edition follows a pivotal two-year Rare 2030 Foresight Study\, supported by the European Parliament and European Commission\, that guided a large-scale and multi-stakeholder reflection on rare disease policy in Europe through 2030. \nThe concluding recommendation of Rare2030 was the need for a new European policy framework on rare diseases with measurable and actionable goals. Current actions at Member State level alone\, or legislative changes in specific areas are not enough. We need a new European collective strategy for rare diseases to bring Member States’ commitment to rare diseases under a common umbrella and mark a step forward in the post-COVID world. \nThis ECRD will be a critical opportunity for all stakeholders to consider how to transform this exhaustive review of the strategy on rare diseases into a proposal of concrete actions ultimately creating the ecosystem required to address the unmet needs and persisting inequalities across Europe.
URL:https://www.m4rd.org/event/11th-european-conference-on-rare-disease-orphan-products-ecrd/
LOCATION:ONLINE
CATEGORIES:Conference,Lectures,Networking,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2022/03/Word-Cloud_What-does-ECRD-mean-to-you.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220504T181500
DTEND;TZID=Europe/London:20220504T201500
DTSTAMP:20260509T125811
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:20210622T173000
DTEND;TZID=Europe/London:20210622T183000
DTSTAMP:20260509T125811
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:20210223T120000
DTEND;TZID=Europe/London:20210223T130000
DTSTAMP:20260509T125811
CREATED:20210220T125554Z
LAST-MODIFIED:20210220T130824Z
UID:7707-1614081600-1614085200@www.m4rd.org
SUMMARY:Refsum Disease from an Ophthalmology Perspective
DESCRIPTION:Dr. Bart Leroy\, MD\, PhD will present the Ophthalmology side of Refsum Disease and the benefits of early diagnosis by clinicians\nAdult Refsum Disease is a genetic disorder impacting the metabolism of phytanic acid. The key symptoms are Retinitis Pigmentosa\, loss of smell\, hearing loss\, numbness\, balance issues\, itchy skin\, shortened fingers and toes. It is one of the few causes of Retinitis Pigmentosa that has a proven dietary therapy to slow vision and hearing loss. Therefore\, early diagnosis is critical. \n  \nRegister NOW for this FREE online event \n 
URL:https://www.m4rd.org/event/refsum-disease-from-an-ophthalmology-perspective/
LOCATION:ONLINE
CATEGORIES:Lectures,Ophthalmology,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/02/d703b7_8d1e2155accc49a0a38cfbee716839b5mv2.jpg
ORGANIZER;CN="Global DARE Foundation":MAILTO:info@GlobalDAREFoundation.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200515
DTEND;VALUE=DATE:20200517
DTSTAMP:20260509T125811
CREATED:20200122T185220Z
LAST-MODIFIED:20200318T112441Z
UID:6255-1589500800-1589673599@www.m4rd.org
SUMMARY:The 10th European Conference on Rare Diseases & Orphan Products (ECRD)
DESCRIPTION:The European Conference on Rare Diseases & Orphan Products (ECRD) is recognised globally as the largest\, patient-led rare disease event in which collaborative dialogue\, learning and conversation takes place\, forming the groundwork to shape future rare disease policies.\nThe event draws together more than 800 participants from over 50 countries around the world. Leading\, inspiring and engaging all stakeholders to take action\, ECRD is where innovative solutions in the rare disease field are born. The Conference is an unrivalled opportunity to network and exchange invaluable knowledge with all stakeholders in the rare disease community  – patient representatives\, policy makers\, researchers\, clinicians\, industry representatives\, payers and regulators.
URL:https://www.m4rd.org/event/the-10th-european-conference-on-rare-diseases-orphan-products-ecrd/
LOCATION:ONLINE
CATEGORIES:Conference,Lectures,Networking,Rare Diseases,Showcase
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/01/ecrd2020-visuel-933x250.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200203T180000
DTEND;TZID=Europe/London:20200203T210000
DTSTAMP:20260509T125811
CREATED:20200121T174830Z
LAST-MODIFIED:20200121T175410Z
UID:6199-1580752800-1580763600@www.m4rd.org
SUMMARY:Rare disease spotlight: Aspergillosis
DESCRIPTION:In collaboration Barts & The London\, we will be shining the spotlight on Aspergillosis\nFran Pearson\, a patient who was diagnosed with Aspergillosis and Dr Darius Armstrong\, a consultant in Infectious Disease and Mycology will be hosting this event. \nYou will have the opportunity to learn more about the patient’s experience of being diagnosed with a rare infectious disease and the challenges faced by doctors when diagnosing patients with infectious diseases.
URL:https://www.m4rd.org/event/rare-disease-spotlight-aspergillosis/
LOCATION:Barts & The London School of Medicine – Garrod Building\, London\, E1 2\, United Kingdom
CATEGORIES:Lectures,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/01/78594149_1024621827885798_1782227981196853248_o-2-e1579628377278.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200128T180000
DTEND;TZID=Europe/London:20200128T193000
DTSTAMP:20260509T125811
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
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20191122T083000
DTEND;TZID=Europe/London:20191122T170000
DTSTAMP:20260509T125811
CREATED:20190810T141747Z
LAST-MODIFIED:20190816T122953Z
UID:5650-1574411400-1574442000@www.m4rd.org
SUMMARY:Direct-to-consumer genetic testing: Health and ancestry
DESCRIPTION:The direct to consumer genetic testing is on the rise worldwide\, and while these tests provide people access to their genetic information without necessarily involving a healthcare provider\, the patients search for their doctors’ advice on the results.\nFrom genealogy to health\, healthcare providers are expected to be able to respond to the patients’ questions and be well informed of the benefits and risks of genetic testing direct to the public. \nThrough multidisciplinary lectures from renowned specialists as well as lively panel discussions\, this event will give you a comprehensive view of the tests available and their implications. The meeting will close with a rerun of the dynamic 2018 Varsity debate on the subject and votes from the audience. \nMeeting topics: \n– The genetic tests on offer\, both for health and for ancestry.\n– Insight into the implications of DTC genetic testing.\n– Understand the potential impact of DTC in liver cirrhosis\n– Discuss the ethical concerns and challenges posed by DTC\n– Know the precision of ancestral DNA testing\n– Understand the impact of ancestral testing on populations \nEarly bird pricing available until 18 August 2019
URL:https://www.m4rd.org/event/direct-to-consumer-genetic-testing-health-and-ancestry/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:Lectures
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/05/dna-1811955_1920-1-e1566465568611.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20191008T084500
DTEND;TZID=Europe/London:20191008T163000
DTSTAMP:20260509T125811
CREATED:20190810T142807Z
LAST-MODIFIED:20190816T122908Z
UID:5652-1570524300-1570552200@www.m4rd.org
SUMMARY:The 33rd symposium: Cystic fibrosis in children and adults
DESCRIPTION:Learn from specialists which children with symptoms need to be seen earlier and how to deal with health issues such as visual problems and poor dental hygiene. Explore unusual paediatric presentations that do not have a clear pathway to diagnosis and need multidisciplinary management.\nThis is a joint event with the Odontology Section and therefore the programme will highlight key areas such as tooth decay in children and acute dental problems. \nTopics include: \n\nHow to identify key pointers to diagnosis\nCurrent best practice\nHow to manage unusual paediatric presentations\nThe value of effective communication between specialities
URL:https://www.m4rd.org/event/the-33rd-symposium-cystic-fibrosis-in-children-and-adults/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:Conference,Lectures
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/08/unnamed-3.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20191003T090000
DTEND;TZID=Europe/London:20191004T133000
DTSTAMP:20260509T125811
CREATED:20190822T091840Z
LAST-MODIFIED:20190822T091954Z
UID:5756-1570093200-1570195800@www.m4rd.org
SUMMARY:Pompe Preceptorship
DESCRIPTION:Pompe Preceptorship\, hosted by Mark Holland from the Metabolic Unit\, Manchester\nTopics to be included: \n\nBiochemistry & Genetics of Pompe Disease\nInfantile & Adult Pompe Disease\nMetabolic Myopathy\nBenefits of exercise in Pompe Disease\nNutrition in Pompe Disease\nRespiratory function\nPalliative care\nResearch in Pompe\nFuture of Gene Therapy\nAGSD – Patient Society\nPatient’s Experience of living with the condition\n\nThis event is open to all medical staff but places are limited.  Funding for this event is available. \nFor further information and to request a registration form please contact:\nKaren Wynne\, Mark Holland Metabolic Unit\, Email: karen.wynne@srft.nhs.uk \nTelephone: 0161 206 4365
URL:https://www.m4rd.org/event/pompe-preceptorship/
LOCATION:Mercure Hotel Manchester\, Manchester Piccadilly\, Manchester\, M139WU\, United Kingdom
CATEGORIES:Conference,Lectures,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/05/dna-1811955_1920-1-e1566465568611.jpg
ORGANIZER;CN="Salford Royal NHS Foundation Trust":MAILTO:Keeley.Crompton@srft.nhs.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190923T083000
DTEND;TZID=Europe/London:20190923T173000
DTSTAMP:20260509T125811
CREATED:20190606T205158Z
LAST-MODIFIED:20190606T210400Z
UID:5167-1569227400-1569259800@www.m4rd.org
SUMMARY:RAREsummit19
DESCRIPTION:RAREsummit19 is a 1 day summit focusing on patient-centricity in rare disease progress.\nWe’ll be highlighting exemplars of patient\, patient advocacy groups and carers involvement in the development of drugs\, healthcare and assistive technologies. Join us at the Wellcome Genome Campus: a hub of life-changing science. We think it’s the perfect venue to make progress for rare diseases. \nEarly bird tickets available.  Tiered pricing.
URL:https://www.m4rd.org/event/raresummit19/
LOCATION:Wellcome Genome Campus Conference Centre
CATEGORIES:Conference,Lectures,Networking,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2019/06/RS19-logo-800px-horz.png
ORGANIZER;CN="CRDN":MAILTO:jo@camraredisease.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190627T160000
DTEND;TZID=Europe/London:20190627T180000
DTSTAMP:20260509T125811
CREATED:20190606T203321Z
LAST-MODIFIED:20190606T210444Z
UID:5160-1561651200-1561658400@www.m4rd.org
SUMMARY:Health Horizons: Future Healthcare Forum
DESCRIPTION:Over the previous 20 years\, we have seen a significant change in the healthcare industry. Small molecules have been pushed out of the blockbuster limelight by biologics. Decreasing sequencing cost has allowed more targeted R&D and the use of increasingly interdisciplinary data to influence prognosis has become standard practice. All of this points to a healthcare future with an increasingly personalized approach. But how will this future come together? \nRARE DISEASE: CROSS-SECTOR COLLABORATION AND DIVERGENT THINKING IN DEVELOPING THERAPIES. Are we on the cusp of a rare disease treatment revolution?\nDelegates will hear from a range of experts in this field\, each with a unique perspective on the future of healthcare\, treatments and cures for those affected by rare diseases. \nThis CRDN session brings together stakeholders from research\, industry\, healthcare and patient groups who are at the heart of innovative breakthroughs in therapies and technology to share their expertise in co-creating healthcare today\, and for the future. Hear a mix of inspirational and thought-provoking short talks and take part in a moderated discussion session.
URL:https://www.m4rd.org/event/health-horizons-future-healthcare-forum/
LOCATION:Corpus Christi College Lecture Theatre\, Trumpington Street\, Cambridge\, CB2 1RH\, United Kingdom
CATEGORIES:Conference,Lectures,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/06/https-cdn.evbuc_.com-images-60472577-147790335965-1-original.20190416-130622.jpeg
ORGANIZER;CN="CRDN":MAILTO:jo@camraredisease.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190610T083000
DTEND;TZID=Europe/London:20190610T173000
DTSTAMP:20260509T125811
CREATED:20190403T170403Z
LAST-MODIFIED:20200123T142811Z
UID:4624-1560155400-1560187800@www.m4rd.org
SUMMARY:Epigenetics: The Emerging Key Player in Medicine
DESCRIPTION:Epigenetics is emerging as a key player in medicine. \nWell-known experts in the epigenetics world such as; Professor Wolf Reik\, Professor Stephan Beck\, Professor Sir Adrian Bird\, and Dr Nessa Carey will come together and give awe-inspiring talks across the epigenetics spectrum\, from its role in cancer to mental health\, the relevance to primary care and preventative medicine\, to rare diseases and what we can learn from these. \nWe will hear from those at the cutting edge of the epigenetics revolution and provide valuable insights into health\, disease and new treatments. \nEarly Bird pricing available until 19 April 2019 – RSM Students £25\n \nBOOK NOW \nMeeting topics\n\nUnderstanding epigenetics and the role of chemical modifications to DNA in shaping health and disease\nExploring our increasing appreciation of the impact of epigenetics upon a diverse range of biological processes and diseases\, from cancer to mental health\nRecognising the increasing importance of developing an understanding of epigenetics in clinical practice\nDiscussing the role of epigenetics in developmental programming and the bridge between nature and nurture
URL:https://www.m4rd.org/event/epigenetics-the-emerging-key-player-in-medicine/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:Conference,Epigenetics,Lectures
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190524T093000
DTEND;TZID=Europe/London:20190524T160000
DTSTAMP:20260509T125811
CREATED:20190429T185458Z
LAST-MODIFIED:20190520T150646Z
UID:4798-1558690200-1558713600@www.m4rd.org
SUMMARY:PKU: A Heads Up
DESCRIPTION:Leading experts will explore the pathophysiology of PKU\, the impact of high phenylalanine levels on the brain of adult patients and the effect of PKU and aging.\nPhenylketonuria (PKU) is an inherited disorder that increases the levels of phenylalanine in the blood. Without treatment\, children develop permanent intellectual disabilities. Seizures\, delayed development\, behavioural problems and psychiatric disorders are also common. \nThis day will explore: \n\nPsychological disorders and mental health\nNeurological deterioration\nBone health\nPremature aging\nNutritional complications\n\nFor more information and to book tickets email keeley.crompton@srft.nhs.uk
URL:https://www.m4rd.org/event/pku-a-heads-up/
LOCATION:Salford Royal Hospitals NHS Foundation Trust\, Stott Lane\, Salford\, Manchester\, M6 8HD\, United Kingdom
CATEGORIES:Conference,Lectures,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2019/04/PKU-e1558364786805.png
ORGANIZER;CN="Salford Royal NHS Foundation Trust":MAILTO:Keeley.Crompton@srft.nhs.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190508T084500
DTEND;TZID=Europe/London:20190508T170000
DTSTAMP:20260509T125811
CREATED:20190320T133540Z
LAST-MODIFIED:20200122T091342Z
UID:4529-1557305100-1557334800@www.m4rd.org
SUMMARY:Rare diseases and the Kidney
DESCRIPTION:Hear expert nephrologists from clinical and academic fields present the latest updates and developments in a variety of rare disease areas.\nThe meeting will be of relevance to medical student\, trainees and consultants as it provides a unique opportunity to keep up to date with latest clinical developments\, opportunities and research being conducted\, plus MDT and patient partnerships for these conditions. \nRates start from only £20! \nMeeting topics: \n\nExpert overview of a number of rare diseases affecting the kidney\nBest medical management and potential treatments\nLatest research\, developments and opportunities for future research using the RADAR network\n\nFor more information and to book tickets\, visit the RSM Website.
URL:https://www.m4rd.org/event/rare-diseases-and-the-kidney/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:Conference,Lectures,Nephrology,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/03/kidney_RSM.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190318T180000
DTEND;TZID=Europe/London:20190318T200000
DTSTAMP:20260509T125811
CREATED:20190304T153448Z
LAST-MODIFIED:20200123T043900Z
UID:4496-1552932000-1552939200@www.m4rd.org
SUMMARY:A Talk On Haemophilia
DESCRIPTION:KCL MedGenSoc presents: A Talk on Haemophilia\nWe are honoured to be hosting no less than two guest speakers for this event; \n\nKCH Haematology Consultant Dr Catherine Rea\, who specialises in clotting disorders\nYouTuber Luke Pembroke\, who himself suffers from Haemophilia\n\nRefreshments will be served before and after the talk. \nA sign up for a certificate of attendance will be available at the end of the lecture. \nAs always\, external staff and students are more than welcome to attend\, but purchase a free Eventbrite ticket at least 24 hours before the event \nThis talk is in association with Medics 4 Rare Diseases and sponsored by the MDU.
URL:https://www.m4rd.org/event/a-talk-on-haemophilia/
LOCATION:New Hunt’s House Library\, Guy's Campus\, London
CATEGORIES:Lectures
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20181201
DTEND;VALUE=DATE:20181202
DTSTAMP:20260509T125811
CREATED:20181119T095907Z
LAST-MODIFIED:20200123T003318Z
UID:3378-1543622400-1543708799@www.m4rd.org
SUMMARY:Rare Disease Day 2019
DESCRIPTION:It’s 2018 and rare diseases are still not being consistently diagnosed\, treated and supported effectively.\nFree to attend\,  this 2-day festival will shine a light on some successes and innovative solutions that are striving to address this.  RAREfest will raise awareness of rare conditions and bring together all stakeholders in  the rare disease community alongside the general public from across Cambridgeshire and beyond.
URL:https://www.m4rd.org/event/rare-disease-day-2019/
LOCATION:Guildhall Cambridge\, Cambridge\, United Kingdom
CATEGORIES:Conference,Family Day,Lectures,Showcase
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2018/10/Rare-Disease-Day-2019.jpeg
END:VEVENT
END:VCALENDAR