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X-WR-CALNAME:Medics For Rare Disease
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DTSTART;TZID=Europe/London:20240213T173000
DTEND;TZID=Europe/London:20240213T210000
DTSTAMP:20260426T174130
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:20250308T100000
DTEND;TZID=Europe/London:20250308T183000
DTSTAMP:20260426T174130
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:20260426T174130
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
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251103T130000
DTEND;TZID=Europe/London:20251103T140000
DTSTAMP:20260426T174130
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:20260211T193000
DTEND;TZID=Europe/London:20260211T203000
DTSTAMP:20260426T174130
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:20260426T174130
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:20260516T100000
DTEND;TZID=Europe/London:20260516T160000
DTSTAMP:20260426T174130
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
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/02/Swansea-Rare-Disease-Study-Day.png
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