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X-WR-CALDESC:Events for Medics For Rare Disease
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DTSTART;VALUE=DATE:20201117
DTEND;VALUE=DATE:20201120
DTSTAMP:20260424T094815
CREATED:20201022T084210Z
LAST-MODIFIED:20201022T084210Z
UID:7270-1605571200-1605830399@www.m4rd.org
SUMMARY:Virtual Rare Disease Showcase
DESCRIPTION:Findacure’s Rare Disease Showcase series is a celebration of rare disease projects around the UK\nFindacure’s Virtual Showcase is designed to be a unique event\, with interactive sessions taking place over a three-day period\, including conversations on telemedicine\, artificial intelligence\, patient group innovations\, and the impact of Covid-19 on rare diseases. Our online stage will include talks from across the rare disease spectrum\, supplemented by roundtable discussions\, networking sessions\, one-to-one video chats\, virtual exhibitions and more. \nWhether you wish to attend a single session\, or three days of fun\, secure your place now for free at The Virtual Rare Disease Showcase
URL:https://www.m4rd.org/event/virtual-rare-disease-showcase/
CATEGORIES:Conference,Rare Diseases,Showcase
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/10/https-cdn.evbuc_.com-images-110925457-176390699836-1-original.20200909-132835.jpeg
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20201111T110000
DTEND;TZID=Europe/London:20201112T120000
DTSTAMP:20260424T094815
CREATED:20201009T082949Z
LAST-MODIFIED:20201009T082949Z
UID:7210-1605092400-1605182400@www.m4rd.org
SUMMARY:Vasculitis: registries\, pathways and therapeutics
DESCRIPTION:This free 2 day webinar will provide a comprehensive update on all UKIVAS group activities and plans for the future\, along with recent clinical and research updates in vasculitis.\nThis is a multidisciplinary webinar where adult and paediatric vasculitis management will be examined. \nThe themes highlighted are relevant to; renal\, rheumatology\, respiratory\, ENT\, dermatology and all other disciplines involved in vasculitis management. \nThe RSM is proud to partner this webinar with UKIVAS\, a national rare diseases group co-chaired by Professor Mark Little and Dr Neil Basu. \nWebinar topics include: \n\nThe assessment and treatment of organ-specific manifestation in systemic vasculitis.\nUKIVAS registry activity update with an outline of recent national bioresource and genomic developments.\nNew therapies in complement\, new biologic combination approaches and trial pathways.\nService development\, quality improvement and communication networks.
URL:https://www.m4rd.org/event/vasculitis-registries-pathways-and-therapeutics/
CATEGORIES:Rare Diseases,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200622T123000
DTEND;TZID=Europe/London:20200622T133000
DTSTAMP:20260424T094815
CREATED:20200530T124325Z
LAST-MODIFIED:20200530T124959Z
UID:6798-1592829000-1592832600@www.m4rd.org
SUMMARY:COVID-19 and rare diseases: Risks and opportunities posed by the pandemic
DESCRIPTION:This unique webinar unites experts from primary care\, advocacy and medical genetics within the rare disease sector to discuss the impact of the virus on the rare disease community.\nParticipants will hear about the short and long-term impact of shielding\, consider how to best protect vulnerable populations in the future\, and reflect on the potential beneficial changes to services as a result of the pandemic – most acutely felt by people with complex diseases who depend on an intricate framework of support. \nSpeakers:\nMs Lindsay Weaver\, CEO of Metabolic Support UK \nDr Will Evans\, Clinical practice GP and academic GP\, University of Nottingham & Chair of NP-UK \nDr Elizabeth Forsythe\, Specialist Registrar in Clinical Genetics at Great Ormond Street Hospital
URL:https://www.m4rd.org/event/covid-19-and-rare-diseases-risks-and-opportunities-posed-by-the-pandemic/
LOCATION:Webinar
CATEGORIES:Rare Diseases,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200515
DTEND;VALUE=DATE:20200517
DTSTAMP:20260424T094815
CREATED:20200122T185220Z
LAST-MODIFIED:20200318T112441Z
UID:6255-1589500800-1589673599@www.m4rd.org
SUMMARY:The 10th European Conference on Rare Diseases & Orphan Products (ECRD)
DESCRIPTION:The European Conference on Rare Diseases & Orphan Products (ECRD) is recognised globally as the largest\, patient-led rare disease event in which collaborative dialogue\, learning and conversation takes place\, forming the groundwork to shape future rare disease policies.\nThe event draws together more than 800 participants from over 50 countries around the world. Leading\, inspiring and engaging all stakeholders to take action\, ECRD is where innovative solutions in the rare disease field are born. The Conference is an unrivalled opportunity to network and exchange invaluable knowledge with all stakeholders in the rare disease community  – patient representatives\, policy makers\, researchers\, clinicians\, industry representatives\, payers and regulators.
URL:https://www.m4rd.org/event/the-10th-european-conference-on-rare-diseases-orphan-products-ecrd/
LOCATION:ONLINE
CATEGORIES:Conference,Lectures,Networking,Rare Diseases,Showcase
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/01/ecrd2020-visuel-933x250.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200224T100000
DTEND;TZID=Europe/London:20200224T180000
DTSTAMP:20260424T094815
CREATED:20200121T180232Z
LAST-MODIFIED:20200121T180232Z
UID:6211-1582538400-1582567200@www.m4rd.org
SUMMARY:Drug Repurposing for Rare Diseases 2020 Conference
DESCRIPTION:Findacure’s Drug Repurposing for Rare Diseases Conference is returning for its seventh consecutive year!\nFindacure’s 7th annual conference will showcase excellence in the development of repurposed drugs for rare disease patients\, highlight the potential for patient group-led innovation\, and emphasise repurposing as a valid business model for orphan drug development in industry. Held in celebration of Rare Disease Day\, our event will unite the rare disease community to share in groundbreaking drug repurposing projects that can bring real change to those living with rare diseases.
URL:https://www.m4rd.org/event/drug-repurposing-for-rare-diseases-2020-conference/
LOCATION:America Square Conference Centre\, 17 America Square\, London\, EC3N 2LB\, United Kingdom
CATEGORIES:Conference,Networking,Patient Information Day,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2020/01/Picture1-e1579629397364.png
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200203T180000
DTEND;TZID=Europe/London:20200203T210000
DTSTAMP:20260424T094815
CREATED:20200121T174830Z
LAST-MODIFIED:20200121T175410Z
UID:6199-1580752800-1580763600@www.m4rd.org
SUMMARY:Rare disease spotlight: Aspergillosis
DESCRIPTION:In collaboration Barts & The London\, we will be shining the spotlight on Aspergillosis\nFran Pearson\, a patient who was diagnosed with Aspergillosis and Dr Darius Armstrong\, a consultant in Infectious Disease and Mycology will be hosting this event. \nYou will have the opportunity to learn more about the patient’s experience of being diagnosed with a rare infectious disease and the challenges faced by doctors when diagnosing patients with infectious diseases.
URL:https://www.m4rd.org/event/rare-disease-spotlight-aspergillosis/
LOCATION:Barts & The London School of Medicine – Garrod Building\, London\, E1 2\, United Kingdom
CATEGORIES:Lectures,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/01/78594149_1024621827885798_1782227981196853248_o-2-e1579628377278.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20191122T133000
DTEND;TZID=Europe/London:20191122T143000
DTSTAMP:20260424T094815
CREATED:20190922T123925Z
LAST-MODIFIED:20191008T153342Z
UID:5830-1574429400-1574433000@www.m4rd.org
SUMMARY:A Puff of Smoke Talk and Workshop w/ author and artist Sarah Lippett
DESCRIPTION:A Puff of Smoke (published by Jonathan Cape 7th November) is a graphic memoir about what it is like to grow up with an illness that no one can diagnose.\nSarah Lippett spent eleven years suffering with symptoms from an unknown condition\, until she was diagnosed with the rare disease Moyamoya at the age of 17. \nFor the month of November(1st – 29th November) an exhibition will be held at The Centre For Better Health that will explore the wider themes of the memoir. \nJoin Sarah as she talks through the process of revisiting her past and piecing it back together as a graphic memoir. The talk will be followed by a short workshop where participants are invited to create sequential narratives based on their own lived experiences. No drawing experience necesssary.  Book your place now.
URL:https://www.m4rd.org/event/a-puff-of-smoke-talk-and-workshop-w-author-and-artist-sarah-lippett/
LOCATION:The Centre for Better Health\, 1A Darnley Road\, London\, E9 6QH\, United Kingdom
CATEGORIES:Rare Diseases,workshop
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/09/A-Puff-of-Smoke-Cover-e1569156157319.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20191101T180000
DTEND;TZID=Europe/London:20191101T210000
DTSTAMP:20260424T094815
CREATED:20190922T122007Z
LAST-MODIFIED:20191008T153121Z
UID:5824-1572631200-1572642000@www.m4rd.org
SUMMARY:A Puff of Smoke Book Launch and Exhibition
DESCRIPTION:A Puff of Smoke is a graphic memoir about what it is like to grow up with an illness that no one can diagnose.\nSarah Lippett spent eleven years suffering with symptoms from an unknown condition\, until she was diagnosed with the rare disease Moyamoya at the age of 17. \nFor the month of November(1st – 29th November) an exhibition will be held at The Centre For Better Health that will explore the wider themes of the memoir. \nJoin Sarah to celebrate the launch of the A Puff of Smoke on the 1st of November 6-9pm at The Centre for Better Health in London. Copies of the book will be available for purchase. \nDrinks will be available and everyone is welcome! \nConfirm your attendance on Evenbrite for the chance to WIN a FREE signed copy of A Puff of Smoke.
URL:https://www.m4rd.org/event/a-puff-of-smoke-book-launch-and-exhibition/
LOCATION:The Centre for Better Health\, 1A Darnley Road\, London\, E9 6QH\, United Kingdom
CATEGORIES:book launch,exhibition,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/09/posterforweb-e1569156065729.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20191011T133000
DTEND;TZID=Europe/London:20191011T163000
DTSTAMP:20260424T094815
CREATED:20191002T130612Z
LAST-MODIFIED:20191002T130612Z
UID:5861-1570800600-1570811400@www.m4rd.org
SUMMARY:Rett UK Regional Professionals Day
DESCRIPTION:This is a fantastic opportunity to learn more about this rare and complex disorder in an informal session where you have lots of opportunities to ask questions.\nWith over 30 years’ experience\, Rett UK is the only UK charity providing professional family support services and training for anyone involved in supporting someone with Rett syndrome. \nAimed at SLTs\, OTs\, GPs and carers\, this is a free event where the Rett UK team get the opportunity to educate you on this rare neurological disorder\, to answer questions and to inform you of other future events they will be holding.
URL:https://www.m4rd.org/event/rett-uk-regional-professionals-day/
LOCATION:THE HUB\, Easton Street\, High Wycombe\, Buckinghamshire\, HP11 1NJ\, United Kingdom
CATEGORIES:Networking,Patient Information Day,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/10/RETT-UK-LOGO.jpg
ORGANIZER;CN="Rett UK":MAILTO:keren.decoito@rettuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20191003T090000
DTEND;TZID=Europe/London:20191004T133000
DTSTAMP:20260424T094815
CREATED:20190822T091840Z
LAST-MODIFIED:20190822T091954Z
UID:5756-1570093200-1570195800@www.m4rd.org
SUMMARY:Pompe Preceptorship
DESCRIPTION:Pompe Preceptorship\, hosted by Mark Holland from the Metabolic Unit\, Manchester\nTopics to be included: \n\nBiochemistry & Genetics of Pompe Disease\nInfantile & Adult Pompe Disease\nMetabolic Myopathy\nBenefits of exercise in Pompe Disease\nNutrition in Pompe Disease\nRespiratory function\nPalliative care\nResearch in Pompe\nFuture of Gene Therapy\nAGSD – Patient Society\nPatient’s Experience of living with the condition\n\nThis event is open to all medical staff but places are limited.  Funding for this event is available. \nFor further information and to request a registration form please contact:\nKaren Wynne\, Mark Holland Metabolic Unit\, Email: karen.wynne@srft.nhs.uk \nTelephone: 0161 206 4365
URL:https://www.m4rd.org/event/pompe-preceptorship/
LOCATION:Mercure Hotel Manchester\, Manchester Piccadilly\, Manchester\, M139WU\, United Kingdom
CATEGORIES:Conference,Lectures,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/05/dna-1811955_1920-1-e1566465568611.jpg
ORGANIZER;CN="Salford Royal NHS Foundation Trust":MAILTO:Keeley.Crompton@srft.nhs.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190923T083000
DTEND;TZID=Europe/London:20190923T173000
DTSTAMP:20260424T094815
CREATED:20190606T205158Z
LAST-MODIFIED:20190606T210400Z
UID:5167-1569227400-1569259800@www.m4rd.org
SUMMARY:RAREsummit19
DESCRIPTION:RAREsummit19 is a 1 day summit focusing on patient-centricity in rare disease progress.\nWe’ll be highlighting exemplars of patient\, patient advocacy groups and carers involvement in the development of drugs\, healthcare and assistive technologies. Join us at the Wellcome Genome Campus: a hub of life-changing science. We think it’s the perfect venue to make progress for rare diseases. \nEarly bird tickets available.  Tiered pricing.
URL:https://www.m4rd.org/event/raresummit19/
LOCATION:Wellcome Genome Campus Conference Centre
CATEGORIES:Conference,Lectures,Networking,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2019/06/RS19-logo-800px-horz.png
ORGANIZER;CN="CRDN":MAILTO:jo@camraredisease.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190710T133000
DTEND;TZID=Europe/London:20190710T170000
DTSTAMP:20260424T094815
CREATED:20190529T195130Z
LAST-MODIFIED:20190606T210007Z
UID:5054-1562765400-1562778000@www.m4rd.org
SUMMARY:BPSU Tea Party
DESCRIPTION:The British Paediatric Surveillance Unit invites you to this year’s event to enjoy afternoon tea and cakes\, hear young people speak about their experience of living with rare disease and visit informational stands.\nThe BPSU rare disease tea party will bring together stakeholders from across the rare disease community to hear young people and patient advocates speak about their experience of living with rare disease and working in the rare disease field. \nThis event is intended to be an informal networking opportunity with children and young people and carers\, healthcare professionals\, researchers and policy makers.
URL:https://www.m4rd.org/event/bpsu-tea-party/
LOCATION:Royal College of Paediatrics and Child Health\, 5-11 Theobalds Road\, London\, WC1X 8SH\, United Kingdom
CATEGORIES:Child and Young Person,Family Day,Networking,paediatric,Patient Information Day,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/05/unnamed-2-e1559854793637.jpg
ORGANIZER;CN="BPSU":MAILTO:enquiries@rcpch.ac.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190627T160000
DTEND;TZID=Europe/London:20190627T180000
DTSTAMP:20260424T094815
CREATED:20190606T203321Z
LAST-MODIFIED:20190606T210444Z
UID:5160-1561651200-1561658400@www.m4rd.org
SUMMARY:Health Horizons: Future Healthcare Forum
DESCRIPTION:Over the previous 20 years\, we have seen a significant change in the healthcare industry. Small molecules have been pushed out of the blockbuster limelight by biologics. Decreasing sequencing cost has allowed more targeted R&D and the use of increasingly interdisciplinary data to influence prognosis has become standard practice. All of this points to a healthcare future with an increasingly personalized approach. But how will this future come together? \nRARE DISEASE: CROSS-SECTOR COLLABORATION AND DIVERGENT THINKING IN DEVELOPING THERAPIES. Are we on the cusp of a rare disease treatment revolution?\nDelegates will hear from a range of experts in this field\, each with a unique perspective on the future of healthcare\, treatments and cures for those affected by rare diseases. \nThis CRDN session brings together stakeholders from research\, industry\, healthcare and patient groups who are at the heart of innovative breakthroughs in therapies and technology to share their expertise in co-creating healthcare today\, and for the future. Hear a mix of inspirational and thought-provoking short talks and take part in a moderated discussion session.
URL:https://www.m4rd.org/event/health-horizons-future-healthcare-forum/
LOCATION:Corpus Christi College Lecture Theatre\, Trumpington Street\, Cambridge\, CB2 1RH\, United Kingdom
CATEGORIES:Conference,Lectures,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/06/https-cdn.evbuc_.com-images-60472577-147790335965-1-original.20190416-130622.jpeg
ORGANIZER;CN="CRDN":MAILTO:jo@camraredisease.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190625T093000
DTEND;TZID=Europe/London:20190625T170000
DTSTAMP:20260424T094815
CREATED:20190429T190643Z
LAST-MODIFIED:20190615T150030Z
UID:4806-1561455000-1561482000@www.m4rd.org
SUMMARY:Managing complex neurological disorders in the community
DESCRIPTION:This conference will delve into some of the perceived mysteries and issues associated with ‘complex’ neurological conditions\, in an attempt to make them less ‘complex’\, and help you to address some of the unmet care needs of the people living complex neurological disorders.\nTopics include: \n\nEpilepsy\, Parkinson’s and Autism – what links them?\nMND: Hope from despair through multidisciplinary care\nManaging the challenges of Complex Epilepsy and Subsequent QoL impact\nUncovering a complex neurological disorder – key signs & symptoms indicating the need for a referral\nWhen is a neurological presentation not a neurological condition?\n\nFor more information and to book tickets
URL:https://www.m4rd.org/event/managing-complex-neurological-disorders-in-the-community/
LOCATION:Council House\, Birmingham\, Council House\, Victoria Square\, Birmingham\, B1 1BB\, United Kingdom
CATEGORIES:Conference,Neurology,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2019/04/PCNS.png
ORGANIZER;CN="Primary Care & Community Neurology Society":MAILTO:info@p-cns.corg.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190524T093000
DTEND;TZID=Europe/London:20190524T160000
DTSTAMP:20260424T094815
CREATED:20190429T185458Z
LAST-MODIFIED:20190520T150646Z
UID:4798-1558690200-1558713600@www.m4rd.org
SUMMARY:PKU: A Heads Up
DESCRIPTION:Leading experts will explore the pathophysiology of PKU\, the impact of high phenylalanine levels on the brain of adult patients and the effect of PKU and aging.\nPhenylketonuria (PKU) is an inherited disorder that increases the levels of phenylalanine in the blood. Without treatment\, children develop permanent intellectual disabilities. Seizures\, delayed development\, behavioural problems and psychiatric disorders are also common. \nThis day will explore: \n\nPsychological disorders and mental health\nNeurological deterioration\nBone health\nPremature aging\nNutritional complications\n\nFor more information and to book tickets email keeley.crompton@srft.nhs.uk
URL:https://www.m4rd.org/event/pku-a-heads-up/
LOCATION:Salford Royal Hospitals NHS Foundation Trust\, Stott Lane\, Salford\, Manchester\, M6 8HD\, United Kingdom
CATEGORIES:Conference,Lectures,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2019/04/PKU-e1558364786805.png
ORGANIZER;CN="Salford Royal NHS Foundation Trust":MAILTO:Keeley.Crompton@srft.nhs.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190508T084500
DTEND;TZID=Europe/London:20190508T170000
DTSTAMP:20260424T094815
CREATED:20190320T133540Z
LAST-MODIFIED:20200122T091342Z
UID:4529-1557305100-1557334800@www.m4rd.org
SUMMARY:Rare diseases and the Kidney
DESCRIPTION:Hear expert nephrologists from clinical and academic fields present the latest updates and developments in a variety of rare disease areas.\nThe meeting will be of relevance to medical student\, trainees and consultants as it provides a unique opportunity to keep up to date with latest clinical developments\, opportunities and research being conducted\, plus MDT and patient partnerships for these conditions. \nRates start from only £20! \nMeeting topics: \n\nExpert overview of a number of rare diseases affecting the kidney\nBest medical management and potential treatments\nLatest research\, developments and opportunities for future research using the RADAR network\n\nFor more information and to book tickets\, visit the RSM Website.
URL:https://www.m4rd.org/event/rare-diseases-and-the-kidney/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:Conference,Lectures,Nephrology,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/03/kidney_RSM.jpg
END:VEVENT
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