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X-WR-CALDESC:Events for Medics For Rare Disease
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251210T190000
DTEND;TZID=Europe/London:20251210T200000
DTSTAMP:20260418T134851
CREATED:20251010T133137Z
LAST-MODIFIED:20251023T212334Z
UID:13742-1765393200-1765396800@www.m4rd.org
SUMMARY:Rare 101: Train the Trainer – Plan Your Own Rare Disease Session
DESCRIPTION:Learn how to deliver engaging Rare Disease 101 talks with tips\, resources\, and insights from experienced ambassadors. \nThinking of running a Rare 101 training session in 2026? Whether you’re planning a full session or just have 10 minutes to introduce the basics\, this online training is designed to help you succeed. \nJoin our ambassadors—who have run successful sessions before—for an engaging and practical online workshop. Discover how to plan your own Rare 101 talk\, get inspired by real examples\, and access the resources you need to deliver a meaningful session. \nWhat to Expect: \nPractical Resources: Get tools and materials to help you plan and deliver your Rare 101 talk.\nExpert Insights: Learn the fundamentals of rare disease and understand how every healthcare professional can make a difference.\nTips & Tricks: Hear from ambassadors who have delivered sessions successfully.\nInteractive Q&A: Ask your questions and get advice from Helen\, our experienced trainer. \nSign up today to secure your spot and start planning your impactful Rare 101 session!
URL:https://www.m4rd.org/event/rare-101-train-the-trainer-plan-your-own-rare-disease-session/
LOCATION:ONLINE
CATEGORIES:Ambassadors,M4RD,Rare Diseases,workshop
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/10/Ambassador-Rare-101-Train-The-Trainer-.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251127T150000
DTEND;TZID=Europe/London:20251127T153000
DTSTAMP:20260418T134851
CREATED:20251017T123435Z
LAST-MODIFIED:20251017T123435Z
UID:13747-1764255600-1764257400@www.m4rd.org
SUMMARY:Brew & Banter: Alumni Edition
DESCRIPTION:Join our Medics for Rare Disease alumni online meetup: Brew & Banter Edition! ☕💬 \nReconnect with fellow alumni in this relaxed virtual catch-up. Hear updates from our current ambassadors\, share your experiences\, and explore ways to support and mentor the next generation of Medics for Rare Disease ambassadors. \nWe’d love your input on the format and topics that would be most inspiring or useful to discuss. Come ready to share\, listen\, and connect over a friendly virtual brew!
URL:https://www.m4rd.org/event/brew-banter-alumni-edition/
LOCATION:ONLINE
CATEGORIES:Ambassadors,M4RD,Networking
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/10/Ambassador-Online-Brew-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251008T193000
DTEND;TZID=Europe/London:20251008T200000
DTSTAMP:20260418T134851
CREATED:20251008T143248Z
LAST-MODIFIED:20251008T143248Z
UID:13728-1759951800-1759953600@www.m4rd.org
SUMMARY:Ambassador Welcome Brew
DESCRIPTION:A short\, casual catch-up for Medics for Rare Disease Ambassadors (cohort 2024/25) starting their second year on the Programme. \nThese informal sessions allow the Ambassadors to ask questions of the team and each other and to share experiences and challenges to inspire each other!
URL:https://www.m4rd.org/event/ambassador-welcome-brew/
LOCATION:ONLINE
CATEGORIES:Ambassadors,M4RD,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2025/10/https___cdn.evbuc_.com_images_1114015993_530843553353_1_original.jpeg
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250930T143000
DTEND;TZID=Europe/London:20250930T150000
DTSTAMP:20260418T134851
CREATED:20251008T143325Z
LAST-MODIFIED:20251008T143421Z
UID:13731-1759242600-1759244400@www.m4rd.org
SUMMARY:Ambassador Welcome Brew
DESCRIPTION:A short\, casual catch-up for Medics for Rare Disease Ambassadors (cohort 2024/25) starting their second year on the Programme. \nThese informal sessions allow the Ambassadors to ask questions of the team and each other and to share experiences and challenges to inspire each other!
URL:https://www.m4rd.org/event/ambassador-welcome-brew-2/
LOCATION:ONLINE
CATEGORIES:Ambassadors,M4RD,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2025/10/https___cdn.evbuc_.com_images_1114015993_530843553353_1_original.jpeg
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20250228
DTEND;VALUE=DATE:20250301
DTSTAMP:20260418T134851
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:20250223T093000
DTEND;TZID=Europe/London:20250223T170000
DTSTAMP:20260418T134851
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:20240504T093000
DTEND;TZID=Europe/London:20240504T160000
DTSTAMP:20260418T134851
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:20240213T173000
DTEND;TZID=Europe/London:20240213T210000
DTSTAMP:20260418T134851
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:20240126T140000
DTEND;TZID=Europe/London:20240126T153000
DTSTAMP:20260418T134851
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
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/12/39295BA8-B343-4A44-98EA-B95FFEEED661.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230720T133000
DTEND;TZID=Europe/London:20230720T180000
DTSTAMP:20260418T134851
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
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2023/05/unnamed.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230317
DTEND;VALUE=DATE:20230319
DTSTAMP:20260418T134851
CREATED:20230224T155726Z
LAST-MODIFIED:20230224T160321Z
UID:10478-1679011200-1679183999@www.m4rd.org
SUMMARY:RSE Network Support Meeting
DESCRIPTION:Rett syndrome is a rare\, genetic\, neurological disorder affecting mainly females (1:10\,000) and very few males. It is present from conception. After a period of ‘near normal’ development\, the child experiences a regression in key skills\, usually mobility\, speech and hand use between the ages of one and two years. The child may appear very withdrawn during this stage and this often leads to a misdiagnosis of being on the autistic spectrum. Multiple comorbidities appear post regression including epilepsy\, breathing disruption\, scoliosis\, gut and bowel problems. Whilst the disorder is genetic\, in the majority of cases it is not inherited. Rett syndrome is usually caused by a fault on a gene called MECP2 which is found on the X chromosome. People with Rett syndrome have profound and multiple physical and learning disabilities. They are totally reliant on others for support throughout their lives\, yet they are radiating love and enjoying their life to the fullest. \nWe are delighted that registration is now open for the Rett Syndrome Europe Network Support and Research Event. Many thanks to our funders The European Joint Programme for Rare Diseases Network Support Scheme and our sponsors Anavex\, Taysha\, Neurogene and Neuren for making this possible. \nThe main meeting is in Budapest\, Hungary with satellite meetings in the UK\, Netherlands\, Serbia\, Georgia\, Croatia and Turkey. The ‘in person’ satellite meetings are by invitation only but anyone can register to view the presentations which are being shown on 17/18 March 2023. They will also be available post event to view at a time of your choosing. \nWe have a limited number of places for people to attend the satellite meeting at The Angela Ruskin University\, Cambridge in person. It is free including lunch both days and dinner on the Friday evening. If you are interested in this opportunity to meet and network with several experienced Rett researchers and clinicians\, please email bjenner@rettsyndrome.eu
URL:https://www.m4rd.org/event/rse-network-support-meeting/
LOCATION:ONLINE
CATEGORIES:M4RD,Rare Diseases,Research,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/02/RSE-network-and-research-meeting.png
ORGANIZER;CN="Rett UK":MAILTO:keren.decoito@rettuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230306T180000
DTEND;TZID=Europe/London:20230306T193000
DTSTAMP:20260418T134851
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;TZID=Europe/London:20230215T123000
DTEND;TZID=Europe/London:20230215T180000
DTSTAMP:20260418T134851
CREATED:20220812T120200Z
LAST-MODIFIED:20221028T104855Z
UID:9811-1676464200-1676484000@www.m4rd.org
SUMMARY:The Unusual Suspects: rare disease in everyday medicine
DESCRIPTION:We are delighted to announce our 10th annual symposium and\, for the first time since 2020\, it’s returning live and in-person!\nSAVE THE DATE… Join us on Wednesday 15th February 2023 at 1 Wimpole Street for M4RD’s annual symposium ‘The Unusual Suspects: rare disease in everyday medicine’. \nThe Unusual Suspects has been a popular event in the rare disease calendar for many years\, allowing healthcare professionals at all levels\, trainees and students to come together to learn more about the importance of understanding rare diseases as a whole\, with a large focus on improving awareness and management and the lived patient experience. \nFollowing our online symposiums in 2021 and 2022\, we are excited to be back in London hosting this event from the home of the Royal Society of Medicine\, in the Wheatley Room.  The theme this year will be on mental health and will follow the launch of our new MH module being launched on M4RD Learn in 2023. \nThis is the only medical meeting of its type in the UK that brings together stakeholders from across all sectors and rare diseases in order to teach those who don’t yet know much about rare disease. We will hear from patients\, parents\, advocates and clinicians. \nThis event will also be available to live stream if you are unable to join us in person. \nClick here for more details\, including our programme and how to register.
URL:https://www.m4rd.org/event/the-unusual-suspects-rare-disease-in-everyday-medicine-2/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:M4RD,Royal Society of Medicine
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2022/08/Wednesday-15th-February-2023.png
END:VEVENT
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