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DTSTART;VALUE=DATE:20221124
DTEND;VALUE=DATE:20221126
DTSTAMP:20260423T205259
CREATED:20220916T115556Z
LAST-MODIFIED:20220916T115556Z
UID:9978-1669248000-1669420799@www.m4rd.org
SUMMARY:Get Started with Genomics CPD Course
DESCRIPTION:The implementation of next-generation sequencing technologies has enabled genomics to become a mainstream subject in medicine. The UK has now adopted Whole Genome Sequencing (WGS) in clinical practice\, and the use of genomic sequencing technologies in healthcare has become widespread across many countries. Healthcare professionals across the world need the skills to understand genomics and what it means for their patients. \nThis course will provide participants with the basic principles of genomic medicine. The content will include the distinction between genetics and genomics and a focus on understanding the different modes of inheritance. With a focus on practical case studies and a workshop-style of delivery\, the course will offer the opportunity to engage with academics and fellow participants and build collaborative networks. \nCourse Leads\nProfessor Anna Murray – Associate Professor in Human Genetics\nDr Julia Baptista – Lecturer in Clinical Education\nSee the Speakers page for the full faculty list. \nDelivery Dates and Format\nThe course will be delivered on 24th and 25th Nov 2022 in a hybrid format (virtually and in-person at the University of Exeter) \nWho is it for?\nThe course is aimed at clinicians and other healthcare professionals who need an introductory course in genomics. This course would be an ideal access course for those wishing to pursue further studies\, in particular the MSc in Genomic Medicine. \nLearning Outcomes\nAt the end of the course the learner will be expected to be able to: \n\nDefine the key concepts of genetics and genomics\nUnderstand the main approaches to genomic testing and principles of variant classification\nUnderstand the main modes of inheritance in humans (autosomal dominant\, autosomal recessive\, X-linked\, and mitochondrial) and recognise their characteristic features and patterns\nUnderstand that genetic disorders might be inherited from an affected parent\, an unaffected parent\, both unaffected parents or arise spontaneously\nApply the knowledge of mode of inheritance in the context of a clinical report and the given family scenario\nBecome familiar with the basics of genome browsers to view gene information and interpret genomic information in clinical reports\n\nCertificate and Accreditation\nParticipants will receive a certificate of participation including both CPD points applied for through the Royal College of Physicians and learning outcomes\, which can be used towards your own professional development. \nFor more details about the course including fees and delivery see the course details page.
URL:https://www.m4rd.org/event/get-started-with-genomics-cpd-course/
LOCATION:University of Exeter\, St Luke's Campus\, Heavitree Road\, Exeter\, EX1 2LU\, United Kingdom
CATEGORIES:Genomics,Medical Students,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2022/09/pexels-edward-jenner-4033148.jpg
ORGANIZER;CN="University of Exeter Medical School":MAILTO:UEMS_CPD@exeter.ac.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221126
DTEND;VALUE=DATE:20221127
DTSTAMP:20260423T205259
CREATED:20220609T093342Z
LAST-MODIFIED:20220609T093342Z
UID:9581-1669420800-1669507199@www.m4rd.org
SUMMARY:RAREfest22: Educate\, Engage\, Empower
DESCRIPTION:FREE to attend\, RAREfest22 is a public-facing\, rare disease inspired festival featuring interactive talks\, demos and exhibits\, film and art showcasing ground-breaking science\, visionary technology and pioneering organisations improving lives and bringing hope to those living with rare conditions.\nAn award-winning festival that is as UNIQUE as the patients it champions. Featuring the brightest minds in rare disease research\, the innovators of life-changing tech\, the pioneers in rare disease medicine\, and the patients whose powerful voices must be heard. For the experts. For the curious. For everyone. For FREE. \nCambridge Rare Disease Network is a platform for change. It is the infrastructure that unites patients\, advocates\, experts and leaders to address the challenges faced by people affected by rare diseases. By sharing knowledge and experience\, and working together\, the journey toward s better diagnosis\, treatment and support for patients and their families is smoother and more certain. \nBook now
URL:https://www.m4rd.org/event/rarefest22-educate-engage-empower/
LOCATION:The Guildhall\, Market Square\, Cambridge\, CB2 3QB
CATEGORIES:exhibition,Festival,Genetics,Genomics,Networking,Patient advocacy,Rare Diseases
ATTACH;FMTTYPE=image/webp:https://www.m4rd.org/wp-content/uploads/2022/06/https-cdn.evbuc_.com-images-286969269-134598541307-1-original.20220518-133206.webp
ORGANIZER;CN="CRDN":MAILTO:jo@camraredisease.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230222T180000
DTEND;TZID=Europe/London:20230222T193000
DTSTAMP:20260423T205259
CREATED:20230222T113454Z
LAST-MODIFIED:20230222T113454Z
UID:10462-1677088800-1677094200@www.m4rd.org
SUMMARY:Shining a Light on Silver-Russell Syndrome (SRS) on Rare Disease Day
DESCRIPTION:Join us for this ONLINE event on Rare Disease Day 2023\, find out about how rare genetic conditions\, like SRS\, are diagnosed and hear about what it’s like to live with Silver-Russell syndrome (SRS). \n\n\nFeaturing \n\nGracie Taylor\, Patient Voice (& Science Insights Alumni)\nProf Mary Porteous\, SE Scotland Rare Disease Diagnostic Service\nDr Emma Wakeling\, Clinical Genetics and Genomics Consultant\, Great Ormond Street Hospital  & Medical Advisor to Child Growth Foundation\nJeff Bolton\, Chair\, Child Growth Foundation
URL:https://www.m4rd.org/event/silver-russell-syndrome/
LOCATION:ONLINE
CATEGORIES:Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/02/image.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230228T110000
DTEND;TZID=Europe/London:20230228T130000
DTSTAMP:20260423T205259
CREATED:20230223T104435Z
LAST-MODIFIED:20230223T104435Z
UID:10466-1677582000-1677589200@www.m4rd.org
SUMMARY:Conducting rare disease research in the context of clinical care
DESCRIPTION:11.00 am Introduction and welcome Tony Lockett (CPMR London) \n11.05 am Dr Lucy McKay (Medics for rare diseases)- Can Medical Education\nHelp in the Conduct of Research in Rare Diseases? \n11.30 am Dr Robin Lachman (University College London) – Does\nEvidence-based Medicine Work for Rare Diseases? \n12.00 pm Fleur Chandler (Sanofi) Putting it into perspective\, a view from\nboth sides for evidence generation in rare paediatric conditions \nJoin the meeting here 
URL:https://www.m4rd.org/event/conducting-rare-disease-research-in-the-context-of-clinical-care/
LOCATION:ONLINE
CATEGORIES:Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/02/Screenshot-2023-02-23-at-10.43.08.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230228T190000
DTEND;TZID=Europe/London:20230228T203000
DTSTAMP:20260423T205259
CREATED:20230120T150914Z
LAST-MODIFIED:20230120T152039Z
UID:10328-1677610800-1677616200@www.m4rd.org
SUMMARY:Beyond the Student Voice Prize
DESCRIPTION:The Student Voice Prize is delighted to invite you to our second annual virtual rare disease day event ‘Beyond the Student Voice Prize;’ an opportunity to connect with peers and patient group leaders to learn more about the rare community and how you can get involved and continue your advocacy.\nWhat can you expect? \nThe event will be an informal opportunity for you to meet fellow entrants to the competition\, connect with patient group advocates and hear from those working actively in rare diseases. There will be a series of short inspiring presentations from a cross-section of individuals as well as handy guidance for getting more involved with the rare disease community and building a focus on rare into your career. \nWho is this event for?  \n\nPrevious entrants of the Student Voice Prize\nProspective entrants of the Student Voice Prize\nMedical students interested in learning more about rare conditions and getting involved in the community\nRare disease patient group leaders who have been involved in the Student Voice Prize in the past\nRare Disease patient group leaders who haven’t been involved in the Student Voice Prize in the past- all are welcome!\n\nWhy should you attend?  \nRare diseases are collectively common\, meaning you are likely to come across them in one form or other in your medical career. Learning about them early can better prepare you as a future clinician and can ensure better outcomes for individuals diagnosed and living with rare conditions. \nRare diseases are gaining increasing momentum as pressing health priorities worldwide\, compounded by advances such as the first-ever UN Resolution on persons with rare diseases and the new UK Rare Diseases Framework. There has never been a better time to get involved with the rare disease community to help create change\, raise awareness and drive your own personal development. \nThe Student Voice Prize is much more than just a competition. It has proven itself to be a gateway for many medical students\, nurses and scientists who want to engage with patients from across the medical spectrum\, particularly in rare disease. This is your chance to go beyond and become an advocate for a large\, but poorly represented community and help make a real difference in the lives of rare disease patients and their families.\n———————————————————————————————–\nThe Student Voice Prize is a project run in collaboration by Medics4RareDiseases (Charity No 1183996) and Beacon (Charity No 1149646) \n 
URL:https://www.m4rd.org/event/btsvp/
LOCATION:LIVE STREAM
CATEGORIES:Rare Diseases,Student Voice Prize,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/01/stvp.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230306T180000
DTEND;TZID=Europe/London:20230306T193000
DTSTAMP:20260423T205259
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:20230317
DTEND;VALUE=DATE:20230319
DTSTAMP:20260423T205259
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;VALUE=DATE:20230325
DTEND;VALUE=DATE:20230327
DTSTAMP:20260423T205259
CREATED:20230303T100326Z
LAST-MODIFIED:20230303T100326Z
UID:10732-1679702400-1679875199@www.m4rd.org
SUMMARY:SFGH Global Health Conference
DESCRIPTION:Students for Global Health is excited to announce that our Annual Global Health Conference which will be held in Manchester over the weekend of March 25th-26th! \nStudents for Global Health is an organisation\, network and community. In our 20 year history\, we have evolved into the leading student voice for health\, representing students who are passionate about creating a fair and just world in which equity in health is a reality for all. \nThis conference is open to all students and graduates with an interest in global health\, as well as international students. This is an excellent opportunity for you to meet with like-minded individuals\, network with professionals in the field\, and gain valuable insights and knowledge on the latest developments in global health. \nWe will have speakers covering topics ranging from deconstructing colonial narratives within medicine and health to adolescent global health. \nThere is also an opportunity for those who have undertaken research or electives abroad to submit and present an abstract on any topic related to global or public health. Link to submit an abstract: https://forms.gle/VaFcSJkpQRovHMuW6 \nTransport and accomodation funding may also be available! For any queries regarding this\, please contact director@studentsforglobalhealth.org \nWe look forward to welcoming you all!
URL:https://www.m4rd.org/event/sfgh-global-health-conference/
LOCATION:Manchester Royal Infirmary
CATEGORIES:Conference,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/03/early-bird-tickets.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230719T123000
DTEND;TZID=Europe/London:20230719T150000
DTSTAMP:20260423T205259
CREATED:20230710T103746Z
LAST-MODIFIED:20230710T103746Z
UID:11098-1689769800-1689778800@www.m4rd.org
SUMMARY:Rare @ Manchester - 1st Anniversary Celebration Event
DESCRIPTION:We are thrilled to invite you to this special event to mark the one-year anniversary of the Manchester Rare Conditions Centre. \nThis event will highlight the significant strides Manchester has made in improving the lives of individuals with rare conditions. \nThe aim of this celebration is to showcase the progress the centre has made in the last year\, with speakers from our specialist clinical services\, our research theme and academy. \nFull agenda to be announced. \nDue to limited capacity we encourage you to confirm your attendance as soon as possible.
URL:https://www.m4rd.org/event/rare-manchester-1st-anniversary-celebration-event/
LOCATION:Citylabs 1.0 Nelson Street Manchester M13 9NQ
CATEGORIES:Conference,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2023/07/manchester-rare-conditions-centre.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250228
DTEND;VALUE=DATE:20250301
DTSTAMP:20260423T205259
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:20250623T093000
DTEND;TZID=Europe/London:20250623T160000
DTSTAMP:20260423T205259
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:20251027T150000
DTEND;TZID=Europe/London:20251027T160000
DTSTAMP:20260423T205259
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:20260423T205259
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:20251107T123000
DTEND;TZID=Europe/London:20251107T173000
DTSTAMP:20260423T205259
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:20251119T190000
DTEND;TZID=Europe/London:20251119T200000
DTSTAMP:20260423T205259
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:20251210T190000
DTEND;TZID=Europe/London:20251210T200000
DTSTAMP:20260423T205259
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
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260306T120000
DTEND;TZID=Europe/London:20260306T170000
DTSTAMP:20260423T205259
CREATED:20260109T135349Z
LAST-MODIFIED:20260120T094733Z
UID:14355-1772798400-1772816400@www.m4rd.org
SUMMARY:Demystifying the connection between patients and researchers
DESCRIPTION:Co-hosted by Medics for Rare Disease and King’s Health Partners Rare Disease Network \n📅 Date: Friday 6 March 2026 \n⏰ Time: 12:00 – 16:45 \n📍 Location: Great Hall\, King’s College London – Strand Campus\, WC2R 2LS (In-person event) \nAbout the event \nMedics for Rare Disease is pleased to be co-hosting a half-day\, in-person event with the King’s Health Partners Rare Disease Network. \nJoin us for a half‑day event exploring how patients\, researchers\, clinicians and industry partners can work together to drive inclusive\, impactful rare disease research. \nHear real stories\, take part in discussions\, and connect with others working to build equitable research partnerships. \nProgramme highlights\n* Presentations\n* High tea reception with poster displays (more details about Call For Abstracts coming soon)\n* Expert panel discussions. \nWho should attend \nThis event will be of interest to: \nPatients and patient advocates\n* Researchers and clinicians\n* Industry partners\n* Policy makers and research funders\n* Anyone interested in inclusive\, collaborative rare disease research \nRegistration\nBuy your tickets here
URL:https://www.m4rd.org/event/save-the-date-enhancing-inclusivity-in-rare-disease-research/
LOCATION:Kings College London\, Great Hall\, King’s College London – Strand Campus\, London\, London\, WC2R 2LS\, United Kingdom
CATEGORIES:Conference,Health Partnerships,Rare Diseases,Research,workshop
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ORGANIZER;CN="King's Health Partners":MAILTO:jennifer.1.burt@kcl.ac.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260313T093000
DTEND;TZID=Europe/London:20260313T160000
DTSTAMP:20260423T205259
CREATED:20260306T092156Z
LAST-MODIFIED:20260306T092156Z
UID:14885-1773394200-1773417600@www.m4rd.org
SUMMARY:Rare Disease\, NF1 and Primary Care: Research Workshop
DESCRIPTION:Building collaborations to advance rare disease research in primary care \nAre you a primary care academic\, clinician with an interest in rare diseases\, rare-disease researcher\, or an industry partner curious about the future of primary care research in rare conditions? \nIf so\, this interactive research development workshop is for you. \nThis NW RDN NIHR-funded workshop will bring together stakeholders from across primary care\, secondary care\, academia\, patient-focused research\, and industry to explore how primary care can better support people living with rare diseases\, using neurofibromatosis type 1 (NF1) as an exemplar condition. \nThe session will explore:\n* the role of primary care in early recognition and diagnosis\n* diagnostic pathways and longitudinal management\n* coordination across services\n* opportunities to use routinely collected data and digital health tools to strengthen care \nBy identifying key evidence gaps and priority research questions\, the workshop aims to develop a collaborative\, patient-centred research agenda grounded in everyday primary-care practice. \nJoin us to connect\, set research priorities\, and shape collaborative studies that improve outcomes for people living with rare diseases.
URL:https://www.m4rd.org/event/rare-disease-nf1-and-primary-care-research-workshop/
LOCATION:Engine Rooms\, Birchwood Park\, Warrington\, Cheshire\, WA36 YNI
CATEGORIES:clinical,General Practice,HCPs,Lunch & learn,Public health,Rare Diseases,Research,workshop
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/03/Screenshot-2026-03-06-at-09.18.32.png
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END:VCALENDAR