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DTSTART;VALUE=DATE:20250228
DTEND;VALUE=DATE:20250301
DTSTAMP:20260404T000512
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250228T120000
DTEND;TZID=Europe/London:20250228T143000
DTSTAMP:20260404T000512
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:20260404T000512
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250308T100000
DTEND;TZID=Europe/London:20250308T183000
DTSTAMP:20260404T000512
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250516T140000
DTEND;TZID=Europe/London:20250516T160000
DTSTAMP:20260404T000512
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:20260404T000512
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:20260404T000512
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:20260404T000512
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250716T150000
DTEND;TZID=Europe/London:20250716T160000
DTSTAMP:20260404T000512
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250909T100000
DTEND;TZID=Europe/London:20250909T130000
DTSTAMP:20260404T000512
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:20260404T000512
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:20260404T000512
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:20260404T000512
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:20260404T000512
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:20260404T000512
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:20260404T000512
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:20260404T000512
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:20260404T000512
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:20260404T000512
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:20260404T000512
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:20251210T190000
DTEND;TZID=Europe/London:20251210T200000
DTSTAMP:20260404T000512
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:20260115T133000
DTEND;TZID=Europe/London:20260115T150000
DTSTAMP:20260404T000512
CREATED:20260109T140652Z
LAST-MODIFIED:20260109T140740Z
UID:14360-1768483800-1768489200@www.m4rd.org
SUMMARY:Moving the WHA Resolution on Rare Diseases Forward: From Promise to Action
DESCRIPTION:Join Rare Diseases International for this public webinar where they will discuss the current status of the WHA Resolution implementation\, as they approach the World Health Organization Executive Board meeting taking place in February 2026. This webinar will engage in a multistakeholder dialogue focusing on the necessary path forward to accelerate the implementation of the Resolution and importantly the development of the GAPRD.
URL:https://www.m4rd.org/event/moving-the-wha-resolution-on-rare-diseases-forward-from-promise-to-action/
LOCATION:ONLINE
CATEGORIES:Global Health,Policy & Advocacy,Public Engagement,Rare Disease,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/01/RDI.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260122T150000
DTEND;TZID=Europe/London:20260122T153000
DTSTAMP:20260404T000512
CREATED:20260109T145550Z
LAST-MODIFIED:20260109T150302Z
UID:14366-1769094000-1769095800@www.m4rd.org
SUMMARY:Medics for Rare Disease Ambassador & Alumni Brew
DESCRIPTION:Kick off the New Year with a cuppa and a catch-up at our New Year Ambassador Brew ☕ \nThis relaxed\, virtual get-together is a chance for our Ambassador community to reconnect\, welcome new faces\, and ease into the year ahead together. There’s no formal agenda – just good conversation\, shared experiences\, and space to reflect on what’s coming up in 2026 for Medics for Rare Disease. \nWe’ll:\n* Say hello (or welcome back!)\n* Share a few informal updates from the team\n* Chat about what’s ahead for ambassadors this year\n* Create space for questions\, ideas\, and connection \nWhether you’ve been an ambassador/alumni for years or you’re relatively newly involved\, this is a low-pressure\, friendly space to join with a brew of your choice and be part of the conversation. \n👉 Grab a drink\, bring yourself\, and start the year with community.
URL:https://www.m4rd.org/event/medics-for-rare-disease-ambassador-alumni-brew/
LOCATION:ONLINE
CATEGORIES:Ambassadors,Lunch & learn,Rare Disease
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/01/Ambassador-Online-Brew.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260127T190000
DTEND;TZID=Europe/London:20260127T200000
DTSTAMP:20260404T000512
CREATED:20260109T150108Z
LAST-MODIFIED:20260109T150108Z
UID:14369-1769540400-1769544000@www.m4rd.org
SUMMARY:Medics for Rare Disease Ambassador Rare 101: Train the Trainer
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:\n* Practical Resources: Get tools and materials to help you plan and deliver your Rare 101 talk.\n* Expert Insights: Learn the fundamentals of rare disease and understand how every healthcare professional can make a difference.\n* Tips & Tricks: Hear from ambassadors who have delivered sessions successfully.\n* Interactive Q&A: Ask your questions and get advice from Helen\, our experienced trainer.
URL:https://www.m4rd.org/event/medics-for-rare-disease-ambassador-rare-101-train-the-trainer/
LOCATION:ONLINE
CATEGORIES:Ambassadors,Rare Disease
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:20260211T193000
DTEND;TZID=Europe/London:20260211T203000
DTSTAMP:20260404T000512
CREATED:20260109T151523Z
LAST-MODIFIED:20260114T114418Z
UID:14372-1770838200-1770841800@www.m4rd.org
SUMMARY:Rarely Taught: Reflections on Rare Disease Training Globally
DESCRIPTION:Connect with healthcare professionals and students from around the world for a dynamic discussion on rare disease medical training across global contexts. \nAs part of this interactive session\, we’ll also deliver a FLASH Rare Disease 101 training showcasing our updated e-learning course – giving you the opportunity to #LearnYourStripes ahead of Rare Disease Day 2026. \n📅 Event Details\nDate & Time: 11 February 2026\, 19:30–20:30 GMT\nLocation: 💻 Online via Zoom\n👉 Register via Eventbrite and receive the Zoom link shortly before the event \n🌐 What to Expect\nA concise\, high-impact Rare Disease 101 teaching session\nA shared conversation on learning needs\, challenges and opportunities in rare disease medical training\nOpportunities to connect with peers worldwide \n🎟️ Who should attend?\nOpen to healthcare professionals and students globally. FREE to attend with optional £10 donation. \nWhether you’re looking to expand your knowledge\, gain a global perspective\, or connect with like-minded colleagues\, this event is the perfect way to kick-start your Rare Disease Day 2026 learning. \n📌 Save the date and register now!
URL:https://www.m4rd.org/event/save-the-date-global-rare-disease-101-online-event/
LOCATION:ONLINE
CATEGORIES:Conferences / Workshops,Global Health,HCPs,Lectures,Medical Students,Rare Disease,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/01/E885C233-D7D5-48E3-A930-B83A15A3A332.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260226T140000
DTEND;TZID=Europe/London:20260226T153000
DTSTAMP:20260404T000512
CREATED:20260206T101350Z
LAST-MODIFIED:20260206T101350Z
UID:14789-1772114400-1772119800@www.m4rd.org
SUMMARY:When to Suspect a Rare Disease in Any Practice Setting
DESCRIPTION:Join Medscape for a live educational session\, ‘When to Suspect a Rare Disease in Any Practice Setting’\, featuring our very own CEO Lucy McKay.  \nThis live-streamed event will take place on February 26\, 2026\, at 2 PM GMT / 3 PM CET and will explore practical insights to help clinicians recognize when a rare disease may be at play across diverse clinical settings.  \nThe event will be hosted live on Medscape’s social media platforms—no registration is required. Simply follow @Medscape to watch once the event goes live.
URL:https://www.m4rd.org/event/when-to-suspect-a-rare-disease-in-any-practice-setting/
LOCATION:LIVE STREAM
CATEGORIES:clinical,General Practice,Global Health,HCPs,Lectures,Medical Students,Public Engagement,Public health,Rare Disease
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/02/ME0152025_SocialAd-1.png
ORGANIZER;CN="Medscape Education Global":MAILTO:aduncan@webmd.net
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260227T120000
DTEND;TZID=Europe/London:20260227T140000
DTSTAMP:20260404T000512
CREATED:20260129T141824Z
LAST-MODIFIED:20260129T141824Z
UID:14772-1772193600-1772200800@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 they will 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:\n* Understanding rare diseases and genomics – How advances in genetics are shaping diagnosis and treatment.\n* History of rare disease – How rare disease diagnosis has changed through time.\n* Patient experiences – Real-life stories that highlight the journey from diagnosis to treatment.\n* Support networks & advocacy – Connecting patients with resources for ongoing care. \nYou’ll hear from a range of experts\, from clinicians to charity representatives and patient advocates.  \nIf you have any queries\, please contact Vicki.Geddes@uhb.nhs.uk
URL:https://www.m4rd.org/event/more-than-you-can-imagine-genomics-and-rare-disease-2/
LOCATION:ONLINE
CATEGORIES:Genomics,Networking,Patient Engagement,Policy & Advocacy,Public health,Rare Disease
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/01/iahvbnclcc7uj3b4num1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260228
DTEND;VALUE=DATE:20260301
DTSTAMP:20260404T000512
CREATED:20260114T120713Z
LAST-MODIFIED:20260210T154504Z
UID:14386-1772236800-1772323199@www.m4rd.org
SUMMARY:Rare Disease Day 2026: #ShowYourStripes & #LearnYourStripes
DESCRIPTION:Rare Disease Day 2026 is your chance to stand with the 3.5 million people in the UK living with a rare disease\, and to take one small action that can make a big difference. \nSince 2022\, Medics for Rare Disease has invited healthcare professionals (HCPs)\, medical students and supporters to #ShowYourStripes by wearing stripy socks to spark conversations\, raise awareness and show solidarity with the rare community. \nIn 2026\, we’re going one step further. \nAlongside dusting off your stripey socks\, we’re launching #LearnYourStripes\, a major push to deepen understanding of rare diseases across healthcare and beyond. This year\, we’re asking HCPs not only to show their support\, but to build their rare disease knowledge by completing our 5‑minute Rare Disease training video 🔗 https://www.m4rd.org/rarediseaseday/ \nWhy this matters \nWhile there are thousands of individual rare diseases\, people affected by them face strikingly similar challenges. \n* 3.5 million people in the UK are living with a rare disease\, as many as those living with cancer \n* Patients wait an average of 5 years for a diagnosis\, often being passed between specialists and undergoing unnecessary tests \n* Despite this\, there is no standardised rare disease education in UK medical school curricula or specialty training \n* In a 2023 Medics for Rare Disease study\, 73% of medical students surveyed could not correctly define a rare disease \nGreater rare awareness in healthcare can shorten diagnostic journeys\, reduce patient harm and improve experiences for people living with rare conditions. \nHow to get involved \nIn the week running up to Rare Disease Day (Saturday 28 February 2026)\, we’re inviting healthcare professionals and supporters to: \n1. #ShowYourStripes \n* Wear a pair of stripey socks at work or at home\n* Share a photo on social media using #ShowYourStripes\n* Tag @MedicsForRare to help spread the message \n2. #LearnYourStripes \n* Complete our 5‑minute Rare Disease training video 🔗 https://www.m4rd.org/rarediseaseday/\n* Encourage colleagues\, teams and students to do the same\n* For enquiries about in‑person training\, email: hello@m4rd.org
URL:https://www.m4rd.org/event/rare-disease-day-2026-showyourstripes-learnyourstripes/
CATEGORIES:Global Health,HCPs,Policy & Advocacy,Public Engagement,Public health,Rare Disease
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2026/01/Medics_RDD26_INFOGRAPHIC_SOCIAL_POSTS_1080x1080px_260114_V1-2_FHO.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260306T120000
DTEND;TZID=Europe/London:20260306T170000
DTSTAMP:20260404T000512
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
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/01/Untitled-design-1.png
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:20260404T000512
CREATED:20260306T092156Z
LAST-MODIFIED:20260306T092156Z
UID:14885-1773394200-1773417600@www.m4rd.org
SUMMARY:Rare Disease\, NF1 and Primary Care: Research Workshop
DESCRIPTION:Building collaborations to advance rare disease research in primary care \nAre you a primary care academic\, clinician with an interest in rare diseases\, rare-disease researcher\, or an industry partner curious about the future of primary care research in rare conditions? \nIf so\, this interactive research development workshop is for you. \nThis NW RDN NIHR-funded workshop will bring together stakeholders from across primary care\, secondary care\, academia\, patient-focused research\, and industry to explore how primary care can better support people living with rare diseases\, using neurofibromatosis type 1 (NF1) as an exemplar condition. \nThe session will explore:\n* the role of primary care in early recognition and diagnosis\n* diagnostic pathways and longitudinal management\n* coordination across services\n* opportunities to use routinely collected data and digital health tools to strengthen care \nBy identifying key evidence gaps and priority research questions\, the workshop aims to develop a collaborative\, patient-centred research agenda grounded in everyday primary-care practice. \nJoin us to connect\, set research priorities\, and shape collaborative studies that improve outcomes for people living with rare diseases.
URL:https://www.m4rd.org/event/rare-disease-nf1-and-primary-care-research-workshop/
LOCATION:Engine Rooms\, Birchwood Park\, Warrington\, Cheshire\, WA36 YNI
CATEGORIES:clinical,General Practice,HCPs,Lunch & learn,Public health,Rare Diseases,Research,workshop
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/03/Screenshot-2026-03-06-at-09.18.32.png
END:VEVENT
END:VCALENDAR