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X-WR-CALDESC:Events for Medics For Rare Disease
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260313T093000
DTEND;TZID=Europe/London:20260313T160000
DTSTAMP:20260417T005153
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
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260306T120000
DTEND;TZID=Europe/London:20260306T170000
DTSTAMP:20260417T005153
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:20251103T130000
DTEND;TZID=Europe/London:20251103T140000
DTSTAMP:20260417T005153
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;VALUE=DATE:20230317
DTEND;VALUE=DATE:20230319
DTSTAMP:20260417T005153
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:20220504
DTEND;VALUE=DATE:20220505
DTSTAMP:20260417T005153
CREATED:20220408T083425Z
LAST-MODIFIED:20220408T083425Z
UID:9272-1651622400-1651708799@www.m4rd.org
SUMMARY:Genomics England Research Summit 2022
DESCRIPTION:The Summit is an exciting one-day event that explores the latest research and technology innovations from Genomics England\, partners and complementary fields.\nThrough talks\, panel discussions\, posters and exhibitions across four themes\, you can take part in a valuable programme tailored to your areas of interest. Make connections\, learn new skills and help to shape the next steps in strengthening the ecosystem that’s turning science into healthcare for everyone. \nThe Summit is both virtual and in-person\, held at the Business Design Centre in Islington\, London\, easily accessed from King’s Cross and St Pancras International stations.
URL:https://www.m4rd.org/event/genomics-england-research-summit-2022/
LOCATION:Business Design Centre\, 52 Upper Street\, London\, N1 0QH\, United Kingdom
CATEGORIES:Conference,Genomics,Networking,Research
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2022/04/bknvflhiuapya6edkdrn.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20211117
DTEND;VALUE=DATE:20211119
DTSTAMP:20260417T005153
CREATED:20210825T091828Z
LAST-MODIFIED:20210825T091828Z
UID:8345-1637107200-1637279999@www.m4rd.org
SUMMARY:Vasculitis: From cell to service
DESCRIPTION:This two-day free webinar is composed of a multi-professional faculty reflecting the multi-systemic nature of vasculitis\, comprehensive updates on key UKIVAS group activities\, and research and clinical updates in the field of vasculitis will be addressed. \nThis webinar is a collaboration between the Nephrology Section of the Royal Society of Medicine and UKIVAS.  \nAll specialities interested in the management of vasculitis are invited to attend in both paediatric and adult medicine.  \nThis webinar will:    \n\nDescribe UKIVAS registry activity with an outline of data linkage projects \nExamine recent service development\, quality improvement initiatives and multi-professional communication networks \nProvide updates on bioresource\, basic science and clinical research \nOutline advances in COVID-19 management and the impact of the pandemic on patients with vasculitis \nLearn of newer therapies\, steroid minimisation approaches and trial pathways across a broad range of the vasculitides \nHighlight advances in paediatric vasculitis and communication  \n\nCPD learning applied.
URL:https://www.m4rd.org/event/vasculitis-from-cell-to-service/
LOCATION:Webinar
CATEGORIES:clinical,Rare Diseases,Research,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/08/neq02-enews.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20211018
DTEND;VALUE=DATE:20211020
DTSTAMP:20260417T005153
CREATED:20210907T122346Z
LAST-MODIFIED:20210907T122346Z
UID:8371-1634515200-1634687999@www.m4rd.org
SUMMARY:NORD Breakthrough Summit
DESCRIPTION:NORD Rare Diseases and Orphan Products Breakthrough Summit is back on 18 & 19 October 2021 offering a two-day virtual programme.\nThe summit will discuss the latest updates on: \n\nrare disease diagnosis and research\ngenetics and genomics\ndrug development and patient engagement\nFDA oversight\n\nA limited number of free passes may be available to patient advocates\, students and patients.  Click here to apply.
URL:https://www.m4rd.org/event/nord-breakthrough-summit/
LOCATION:ONLINE
CATEGORIES:Conference,Genetics,Genomics,Networking,Rare Diseases,Research,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/09/Screenshot-2021-09-07-at-13.16.58.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210925
DTEND;VALUE=DATE:20210926
DTSTAMP:20260417T005153
CREATED:20210907T134709Z
LAST-MODIFIED:20210907T134709Z
UID:8378-1632528000-1632614399@www.m4rd.org
SUMMARY:Wolfram Syndrome UK and WellChild International Virtual Conference (Part 2)
DESCRIPTION:Register for your place on this international virtual conference hosted by Wolfram Syndrome UK and WellChild.\nThe 10th WS conference will again be held as virtual events over 2 Saturdays in September 2021. \nOn Saturday 18th September there will be 3 presentations from international speakers and on Saturday 25th September there will be a mix of speakers. \nBoth events are open to the Global WS community\, doctors\, researchers and others interested in Wolfram Syndrome or rare diseases. \nClick here to view the full programme and how to register for individual webinar presentations.
URL:https://www.m4rd.org/event/wolfram-syndrome-uk-and-wellchild-international-virtual-conference-part-2/
LOCATION:ONLINE
CATEGORIES:Conference,Rare Diseases,Research,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/09/DSCN1409-scaled.jpg
ORGANIZER;CN="Wolfram Syndrome UK":MAILTO:admin@wolframsyndrome.co.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210918
DTEND;VALUE=DATE:20210919
DTSTAMP:20260417T005153
CREATED:20210907T134250Z
LAST-MODIFIED:20210907T134250Z
UID:8375-1631923200-1632009599@www.m4rd.org
SUMMARY:Wolfram Syndrome UK and WellChild International Virtual Conference (Part 1)
DESCRIPTION:Register for your place on this international virtual conference hosted by Wolfram Syndrome UK and WellChild.\nThe 10th WS conference will again be held as virtual events over 2 Saturdays in September 2021. \nOn Saturday 18th September there will be 3 presentations from international speakers and on Saturday 25th September there will be a mix of speakers. \nBoth events are open to the Global WS community\, doctors\, researchers and others interested in Wolfram Syndrome or rare diseases. \nClick here to view the full programme and how to register for individual webinar presentations.
URL:https://www.m4rd.org/event/wolfram-syndrome-uk-and-wellchild-international-virtual-conference-part-1/
LOCATION:ONLINE
CATEGORIES:Conference,Rare Diseases,Research,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/09/NEW-WS-UK-Logo-Hi-Res-ISC.jpg
ORGANIZER;CN="Wolfram Syndrome UK":MAILTO:admin@wolframsyndrome.co.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210615
DTEND;VALUE=DATE:20210617
DTSTAMP:20260417T005153
CREATED:20210416T095306Z
LAST-MODIFIED:20210416T095306Z
UID:7839-1623715200-1623887999@www.m4rd.org
SUMMARY:Drug Repurposing for Rare Diseases 2021
DESCRIPTION:Findacure’s Drug Repurposing for Rare Diseases Conference is back for an eighth year\, and this time\, it’s gone virtual!\nNaturally\, this year’s conference will be a little different. COVID-19 has forced us online\, but in grabbing the word’s attention\, it has also become the poster boy for the power of drug repurposing. In a matter of months\, scientists successfully repurposed dexamethasone to treat COVID-19\, so why can’t the same urgency be applied to rare diseases?
URL:https://www.m4rd.org/event/drug-repurposing-for-rare-diseases-2021/
LOCATION:ONLINE
CATEGORIES:Conference,Drug repurposing,Rare Diseases,Research,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/04/Findacure-DrugRepo2020-254-768x512-1.png
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210426
DTEND;VALUE=DATE:20210427
DTSTAMP:20260417T005153
CREATED:20210416T093905Z
LAST-MODIFIED:20210416T093905Z
UID:7830-1619395200-1619481599@www.m4rd.org
SUMMARY:COVID-19 from a Paediatric Perspective: an online BPSU-PHE symposia series
DESCRIPTION:The British Paediatric Surveillance Unit in collaboration with Public Health England will be hosting a symposia series exploring how COVID-19 has impacted on the paediatric service and children and young people.\nThe aim of the symposia series is to consider the impacts of COVID-19 on children and paediatric services. Attendees will be informed on current research being undertaken in this area\, discuss how such research is informing treatment and to explore the extent to which the pandemic is affecting children. \nThe series takes place over two days.
URL:https://www.m4rd.org/event/covid-19-from-a-paediatric-perspective-an-online-bpsu-phe-symposia-series/
LOCATION:Cheshire
CATEGORIES:BPSU,COVID-19,Public health,Research,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/04/Untitled-design-5.png
ORGANIZER;CN="BPSU":MAILTO:enquiries@rcpch.ac.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210416T080000
DTEND;TZID=Europe/London:20210416T170000
DTSTAMP:20260417T005153
CREATED:20210416T094635Z
LAST-MODIFIED:20210416T094635Z
UID:7833-1618560000-1618592400@www.m4rd.org
SUMMARY:East Paediatric Genomics Forum: Drawing Family Histories like a Pro!
DESCRIPTION:Paediatricians and Neonatologists from East of England and East Midlands are invited to join this event to discuss the taking and drawing of family history with a number of ‘patients’/cases presented by the Clinical Genetics Team. \nDuring this session you will: \n\nHear examples of how to take family history\nView a demonstration of drawing a pedigree\nHave the opportunity to ask questions\n\nJoin the meeting here\, note you will be asked to register:
URL:https://www.m4rd.org/event/east-paediatric-genomics-forum-drawing-family-histories-like-a-pro/
LOCATION:Cheshire
CATEGORIES:Genetics,Research,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/04/Untitled-design-6.png
ORGANIZER;CN="East NHS Genomic Laboratory Hub":MAILTO:Laura.Gallwey@addenbrookes.nhs.uk
END:VEVENT
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