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X-WR-CALNAME:Medics For Rare Disease
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X-WR-CALDESC:Events for Medics For Rare Disease
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DTSTART;TZID=Europe/London:20260227T120000
DTEND;TZID=Europe/London:20260227T140000
DTSTAMP:20260404T141826
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
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DTSTART;VALUE=DATE:20260228
DTEND;VALUE=DATE:20260301
DTSTAMP:20260404T141826
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
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260306T120000
DTEND;TZID=Europe/London:20260306T170000
DTSTAMP:20260404T141826
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
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260313T093000
DTEND;TZID=Europe/London:20260313T160000
DTSTAMP:20260404T141826
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
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DTSTART;TZID=Europe/London:20260516T100000
DTEND;TZID=Europe/London:20260516T160000
DTSTAMP:20260404T141826
CREATED:20260210T161238Z
LAST-MODIFIED:20260210T161238Z
UID:14816-1778925600-1778947200@www.m4rd.org
SUMMARY:Swansea Rare Disease Study Day
DESCRIPTION:Medics for Rare Disease is proud to support the Swansea Rare Disease Study Day\, hosted alongside Swansea University. This free event brings together clinical experts\, patient speakers\, and multiple charities and advocacy groups to share knowledge and experiences in the field of rare diseases. \nThe day will feature:\n* Clinical and patient talks from a range of speakers\n* Oral presentation and poster competitions for medical students and resident doctors\, with monetary prizes and certificates – great for specialty training applications\n* Free lunch provided for all attendees\n* Attendance certificates \nCompetition Submission:\nIf you wish to take part in the oral presentation or poster competition\, please submit an abstract here  \nBooking:\nAttendance is free\, but spaces are limited. Secure your spot via Eventbrite\n. \nContact:\nFor queries\, please email:\nOscar: 2307053@swansea.ac.uk\nDr James Ainsworth: james.ainsworth@wales.nhs.uk \nJoin us for a day of learning\, networking\, and celebrating the rare disease community!
URL:https://www.m4rd.org/event/swansea-rare-disease-study-day-2/
LOCATION:Morriston Hospital Education Centre\, Heol Maes Eglwys Treforys SA6 6NL
CATEGORIES:Ambassadors,clinical,Conferences / Workshops,HCPs,Health Partnerships,Lectures,Medical Students,Networking,Patient advocacy,Patient Engagement,Rare Disease
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260602
DTEND;VALUE=DATE:20260605
DTSTAMP:20260404T141826
CREATED:20260115T095026Z
LAST-MODIFIED:20260115T095318Z
UID:14389-1780358400-1780617599@www.m4rd.org
SUMMARY:European Conference on Rare Diseases & Orphan Products (ECRD 2026)
DESCRIPTION:🗓 Date: 2–4 June 2026\n📍 Location: Prague & Online\n🔗 Register: Sign up here \nJoin EURORDIS‑Rare Diseases Europe for the largest patient‑led rare disease policy event in Europe! Over three days\, patients\, advocates\, clinicians\, researchers\, and policymakers will come together to discuss therapy access\, diagnosis\, care\, innovation\, and more. \nWe’re proud to support EURORDIS in sharing this opportunity and encouraging participation across our networks. \n➡️ Register now: https://www.rare-diseases.eu/register/
URL:https://www.m4rd.org/event/european-conference-on-rare-diseases-orphan-products-ecrd-2026/
LOCATION:O2 universum Congress Centre\, Českomoravská 2345/17\, Libeň\, Prague\, 19000\, Czech Republic
CATEGORIES:Conference,Global Health,HCPs,Networking,Rare Disease
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/01/REGISTER-NOW_Square.png
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