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DTSTART;TZID=Europe/London:20240213T173000
DTEND;TZID=Europe/London:20240213T210000
DTSTAMP:20260403T222924
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:20240221T120000
DTEND;TZID=Europe/London:20240221T180000
DTSTAMP:20260403T222924
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:20260403T222924
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:20260403T222924
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:20260403T222924
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:20260403T222924
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:20260403T222924
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:20260403T222924
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:20260403T222924
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:20260403T222924
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:20260403T222924
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:20260403T222924
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:20260403T222924
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:20260403T222924
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:20260403T222924
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:20260403T222924
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:20260403T222924
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
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250715T120000
DTEND;TZID=Europe/London:20250715T140000
DTSTAMP:20260403T222924
CREATED:20250714T142551Z
LAST-MODIFIED:20250714T142551Z
UID:13601-1752580800-1752588000@www.m4rd.org
SUMMARY:Our Voices\, Our Stories: Lived Experiences of Genomic Testing
DESCRIPTION:Genomic testing is a complex clinical topic\, with new developments and discoveries taking place at a rapid rate. Often\, we focus predominantly on the clinical and scientific aspects of genomics\, but it’s crucial to remember that each advancement has life-changing impacts on people across the world. \nIn this webinar\, we’ll be exploring the lived experiences of people who have gone through genomic testing\, research and diagnosis. Each of the participants you will hear from has a unique and impactful story\, and will provide powerful insights into the human side of the genomic testing process. With experiences across cancer and rare disease\, from parent carers through to those diagnosed as adults\, we’ll be shining a light on the emotions involved in testing\, diagnosis and treatment. Not only will you get to hear these compelling stories – you’ll also have the opportunity to ask questions and learn more about the importance of patient and public involvement in genomic testing and research. \nThe webinar will be co-chaired by two clinical experts in genomics – Dr Hannah Titheradge\, Consultant Clinical Geneticist at Birmingham Women’s and Children’s Hospital (BWC)\, and Emma Douglas\, Genetics Clinical Research Practitioner at BWC. Hannah has years of experience working in clinical genetics and is the Rare Disease Lead at BWC\, whilst Emma is an expert in genetic research and is currently working towards her PhD on the patient experience of genomic testing. \nThis session is open to everyone\, whether you’re a patient\, healthcare professional\, or an interested member of the public. If you’ve got lived experience yourself or any questions\, you are welcome to share during the Q&A. For healthcare professionals\, the session promises to provide you with a better understanding of the crucial patient perspective to better support those in your clinic. \nIf you have any queries about the event\, please get in touch. If you’ve got any accessibility requirements\, please let us know during the registration process. \nAnd if you’re interested but aren’t able to attend on the date itself\, make sure to still register and we will send you the recording after the event has taken place! \nYou can sign up here
URL:https://www.m4rd.org/event/our-voices-our-stories-lived-experiences-of-genomic-testing/
LOCATION:ONLINE
CATEGORIES:Conference,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/07/Screenshot-2025-07-14-at-15.25.15.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250716T150000
DTEND;TZID=Europe/London:20250716T160000
DTSTAMP:20260403T222924
CREATED:20250714T141039Z
LAST-MODIFIED:20250714T141145Z
UID:13596-1752678000-1752681600@www.m4rd.org
SUMMARY:Introduction to Delphi Studies
DESCRIPTION:Have you ever heard of a Delphi Study and not quite sure what it entails? Or maybe you have never heard of Delphi? This webinar will be providing training on what a Delphi Study is and how they are run. PhD Candidate\, Shams Al-Ani\, studying Pharmaceutical medicine and regulatory affairs at Centre for Pharmaceutical Medicine Research\, King’s College London will be delivering the training through a 45 minute presentation with time for Q+A session afterwards. \nSign up here
URL:https://www.m4rd.org/event/introduction-to-delphi-studies/
LOCATION:ONLINE
CATEGORIES:Conference,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/07/Screenshot-2025-07-14-at-15.09.04.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250909T100000
DTEND;TZID=Europe/London:20250909T130000
DTSTAMP:20260403T222924
CREATED:20250903T081504Z
LAST-MODIFIED:20250903T081504Z
UID:13669-1757412000-1757422800@www.m4rd.org
SUMMARY:IAG2 Online Workshop
DESCRIPTION:Medics 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. \nWe are hosting this online workshop in order to develop recommendations for the DoHSC about ‘healthcare professional awareness of rare disease’. \nWe will be asking: What is healthcare professional awareness? How do we implement it throughout the NHS? How do we measure it?  If 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:\n* People who have practical ideas\n* People who have experience of driving system change\n* People who have experience developing services in the NHS\n* People with experience designing and implementing e.g. Dementia Friendly Hospitals\n* Healthcare 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:\n* We are not responsible for implementing the recommendations\n* This will not be a forum for exploring single individual’s experiences\n* This will not be a forum for raising concerns or complaints about single cases of care \nAbout IAG2\nListen to this podcast episode to understand the background of the IAG2 and more details about the plan for the day.
URL:https://www.m4rd.org/event/iag2-online-workshop/
LOCATION:ONLINE
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/09/IAG.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250926
DTEND;VALUE=DATE:20250927
DTSTAMP:20260403T222924
CREATED:20250912T145621Z
LAST-MODIFIED:20250912T145621Z
UID:13677-1758844800-1758931199@www.m4rd.org
SUMMARY:Wales Rare Disease Research Network (RDRN) Inaugural Meeting
DESCRIPTION:Ymunwch â ni ar gyfer cyfarfod cyntaf erioed Rhwydwaith Ymchwil i Glefydau Prin Cymru!  \nJoin us for the very first RDRN meeting!
URL:https://www.m4rd.org/event/wales-rare-disease-research-network-rdrn-inaugural-meeting/
LOCATION:Swansea University Bay Campus\, Fabian Way\, Skewen\, SA1 8EP
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/09/Screenshot-2025-09-12-at-15.55.03.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250930T143000
DTEND;TZID=Europe/London:20250930T150000
DTSTAMP:20260403T222924
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251008T193000
DTEND;TZID=Europe/London:20251008T200000
DTSTAMP:20260403T222924
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251027T150000
DTEND;TZID=Europe/London:20251027T160000
DTSTAMP:20260403T222924
CREATED:20251008T142605Z
LAST-MODIFIED:20251008T142605Z
UID:13725-1761577200-1761580800@www.m4rd.org
SUMMARY:Rare Disease Day 2026: Launch Webinar
DESCRIPTION:Join one of two upcoming webinars on either the 27 or 28  October for a first look at Rare Disease Day 2026! Learn more about the resources which have been created and everything that is available for download to use in your campaign. This webinar is for patient advocates\, patient organisations\, industry supporters and all stakeholders in the rare disease community.
URL:https://www.m4rd.org/event/rare-disease-day-2026-launch-webinar/
LOCATION:ONLINE
CATEGORIES:Patient advocacy,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/webp:https://www.m4rd.org/wp-content/uploads/2025/10/RDD-2026-Launch-Webinar.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251103T130000
DTEND;TZID=Europe/London:20251103T140000
DTSTAMP:20260403T222924
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:20251106T090000
DTEND;TZID=Europe/London:20251106T170000
DTSTAMP:20260403T222924
CREATED:20250623T123551Z
LAST-MODIFIED:20250623T123744Z
UID:13555-1762419600-1762448400@www.m4rd.org
SUMMARY:RAREsummit25: CamRARE at 10 – Connecting Moments
DESCRIPTION:2025 marks a special milestone — CamRARE’s 10th anniversary. A decade of progress. A future of possibilities. Over the past decade\, we have championed collaboration\, amplified patient voices\, and driven progress in rare disease research\, policy\, and innovation. Through inspiring keynotes\, dynamic discussions and workshops\, and interactive networking opportunities\, we will reflect on the past 10 years of impact while shaping the future of rare disease collaboration. \nWho will you connect with at RAREsummit25?\nBeing connected is critical in rare diseases and RAREsummit25 brings the right people together – thought leaders\, researchers\, healthcare professionals\, industry pioneers\, policy-makers and —most importantly—individuals living with rare conditions and the organisations that support and advocate for them. \nYou can book tickets for the event here
URL:https://www.m4rd.org/event/raresummit25-camrare-at-10-connecting-moments/
LOCATION:Wellcome Genome Campus Conference Centre
CATEGORIES:Conference
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/06/Screenshot-2025-06-23-at-13.35.14.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251107T123000
DTEND;TZID=Europe/London:20251107T173000
DTSTAMP:20260403T222924
CREATED:20250912T145020Z
LAST-MODIFIED:20250912T145719Z
UID:13674-1762518600-1762536600@www.m4rd.org
SUMMARY:EDIRA 'Let’s COCO: Celebrating the Doers
DESCRIPTION:A Hybrid event celebrating DOERS who showcase their Collaboration – Outreach – Co-creation projects with impactful Outcomes. \nThis is your chance to be part of a dynamic\, hybrid gathering.
URL:https://www.m4rd.org/event/edira-lets-coco-celebrating-the-doers/
LOCATION:Edgbaston Park Hotel
CATEGORIES:Networking,Rare Diseases,Showcase
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2025/09/https___cdn.evbuc_.com_images_1062444883_1004168516393_1_original.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251114T120000
DTEND;TZID=Europe/London:20251114T140000
DTSTAMP:20260403T222924
CREATED:20251017T131311Z
LAST-MODIFIED:20251023T213927Z
UID:13750-1763121600-1763128800@www.m4rd.org
SUMMARY:Genomics in Men's Health: Harnessing the Genome
DESCRIPTION:Join Central and South Genomics this Men’s Health Awareness Month for a free webinar exploring how genomics and men’s health are connected. \nFrom fertility to oncology\, our speakers will discuss how genetics influence wellbeing\, risk\, and treatment options. You’ll hear insights on: \n* X-linked conditions\n* Lynch Syndrome\n* Prostate cancer\n* Male infertility\n* The patient experience \nWhether you’re a healthcare professional or simply curious about how genomics shapes men’s health\, this session offers valuable\, accessible insight into the power of personalised medicine.
URL:https://www.m4rd.org/event/genomics-in-mens-health-harnessing-the-genome/
LOCATION:ONLINE
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/10/auworticu36vt5ksfjha.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251119T190000
DTEND;TZID=Europe/London:20251119T200000
DTSTAMP:20260403T222924
CREATED:20251010T124456Z
LAST-MODIFIED:20251010T124456Z
UID:13739-1763578800-1763582400@www.m4rd.org
SUMMARY:Your Rare Event Toolkit: Plan\, Run\, Inspire
DESCRIPTION:Thinking of running a Rare Disease event in 2026?  Whether it’s a seminar\, study day\, or conference — this session is for you. \nJoin Medics for Rare Diseases and our panel of Ambassadors who successfully organised Rare Disease events last year. Learn the ropes\, get inspired\, and discover how to make your event a success! \nWhat to expect\n💡 Resources and guidance – Find out what support and materials are available to help you plan and deliver your event.\n🧭 Top tips from experience – Hear from Ambassadors who’ve been there and done it\, and learn what worked for them.\n💬 Q&A session – Bring your questions and ideas to our Ambassador panel. \nWho should attend?\nMedics for Rare Diseases Ambassadors: medical students\, trainees\, and healthcare professionals interested in running a Rare Event or patient advocates looking to raise awareness of rare conditions in their community or institution. \nWhy attend\nYou’ll leave with practical advice\, ready-to-use resources\, and the confidence to host your own Rare Event in 2026 — helping your peers and colleagues to become Rare Aware 💜
URL:https://www.m4rd.org/event/your-rare-event-toolkit-plan-run-inspire/
LOCATION:ONLINE
CATEGORIES:Ambassadors,Rare Diseases,workshop
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2025/10/Ambassador-Events-Workshop.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251127T150000
DTEND;TZID=Europe/London:20251127T153000
DTSTAMP:20260403T222924
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
END:VCALENDAR