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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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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220201
DTEND;VALUE=DATE:20220204
DTSTAMP:20260430T015036
CREATED:20211103T132333Z
LAST-MODIFIED:20211103T132333Z
UID:8540-1643673600-1643932799@www.m4rd.org
SUMMARY:The International Rare Disease Showcase
DESCRIPTION:The International Rare Disease Showcase is a virtual event like no other\, bringing everyone together including\, patient groups\, researchers\, medical professionals\, industry representatives and of course patients themselves.\nHere’s what to expect:  \n\nThree days of interactive sessions led by global experts and advocates\nConversations on policy\, patient advocacy\, access and approval\, new technologies\, research and data collection with an international focus!\nPanel discussions and breakout rooms where attendees will be able to interact with speakers and other attendees\nA worldwide\, diverse and multi-stakeholder audience\nPatient group and industry virtual exhibition booths and dedicated patient group poster zone\nAll material will be available to view on-demand for 21 days after the event
URL:https://www.m4rd.org/event/the-international-rare-disease-showcase/
LOCATION:ONLINE
CATEGORIES:Conference,Networking,Rare Diseases,Showcase
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/11/unnamed-12.png
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20211018
DTEND;VALUE=DATE:20211020
DTSTAMP:20260430T015036
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;TZID=Europe/London:20211007T080000
DTEND;TZID=Europe/London:20211007T170000
DTSTAMP:20260430T015036
CREATED:20210705T123316Z
LAST-MODIFIED:20210705T131427Z
UID:8238-1633593600-1633626000@www.m4rd.org
SUMMARY:RAREsummit21
DESCRIPTION:Hear from and engage with a range of stakeholders pioneering change across the rare disease landscape…\n\n\n\n\n\n\n\nCRDN‘s RAREsummit21 is a platform for change. It is the infrastructure that unites patients\, advocates\, experts and leaders to address the challenges faced by people affected by rare diseases. By sharing knowledge and experience\, the journey towards better diagnosis\, treatment and support for patients and their families is smoother and more certain. \n7th October 2021 will see the 5th RAREsummit – a flagship CRDN event gathering over 300 great minds in rare diseases to make connections\, exchange ideas and openly debate possibilities. \nIt’s more than an event – it’s where the magic happens. A powerful movement and platform for change that provides the right ingredients and ecosystem for a better future\, where productive collaborations are nurtured and flourish for future patient impact. \nThe aim of RAREsummit21 is: \n\nto raise awareness of rare conditions and their impact\nto showcase exemplars of impactful patient group collaboration with other stakeholders\nto bring all stakeholders in rare diseases together to drive patient group\, researcher and industry partnering opportunities\nto give stakeholders the knowledge and skills to ensure their practices involve patients and their advocates as essential partners\nto improve the lives of rare disease patients\, together\, with greater efficiency\, collaboration and success
URL:https://www.m4rd.org/event/raresummit21/
LOCATION:ONLINE
CATEGORIES:Conference,Networking,Rare Diseases,Showcase,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/07/RS21-logo-and-date.png
ORGANIZER;CN="CRDN":MAILTO:jo@camraredisease.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210630T093000
DTEND;TZID=Europe/London:20210630T153000
DTSTAMP:20260430T015036
CREATED:20210608T084319Z
LAST-MODIFIED:20210608T084319Z
UID:8175-1625045400-1625067000@www.m4rd.org
SUMMARY:Diverse Discoveries and Inclusive Insights Conference
DESCRIPTION:Come together with like minded professionals who have a passion to ensure no one is left behind. \n\nHear from organisations who are leading the way in engaging with our diverse and multi-cultural society\, the importance of the language used\, developments in genetics and how health inequalities can have a devastating impact on the lives of families affected by genetic conditions. \n\nBreaking Down Barriers know that it is often the fear of offending that stops people from doing anything. This event is a safe space for people to learn from others and explore new innovative approaches to ensure your organisation is inclusive and diverse to meet the needs of the community you serve.\n\n\n\n\nTop Topics:\n\nHealth inequalities the challenges and solutions\nThe impact of doing nothing\nDevelopments in Genetics and pre-implantation diagnosis\nThe power of language\n\nYou can register for this innovative event by following the link below: \nhttps://attendee.gotowebinar.com/register/7018232613206242062
URL:https://www.m4rd.org/event/diverse-discoveries-and-inclusive-insights-conference/
LOCATION:ONLINE
CATEGORIES:Conference,Genetics,Networking,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/06/Untitled-design-14.png
ORGANIZER;CN="Breaking Down Barriers":MAILTO:kerry.leeson@alstrom.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210224T180000
DTEND;TZID=Europe/London:20210224T200000
DTSTAMP:20260430T015036
CREATED:20200814T124039Z
LAST-MODIFIED:20210820T110608Z
UID:7110-1614189600-1614196800@www.m4rd.org
SUMMARY:The Unusual Suspects 2021
DESCRIPTION:The Unusual Suspects: Rare disease in everyday medicine is returning to The Royal Society of Medicine on 24th February!\nThis year it will all be online\, in the evening and free so there is nothing stopping you from joining us. We will be focusing on DIAGNOSIS. Why is a diagnosis so important and why is it imperative that diagnosis comes as early as possible? \nWe will be hearing from patients\, parents\, advocates and clinicians. We are particularly excited to hear about how early diagnosis can allow for gene therapy to change the lives of children born with debilitating rare diseases. \nBOOK NOW!\nAGENDA on 24th February 2021 via Zoom:\n6:00pm Welcome and introduction\nDr Lucy McKay\, Chief Executive Officer\, Medics for Rare Diseases \n6:05pm Rare Disease 101\nDr Lucy McKay \n6:15pm The undiagnosed diseases program\nDr Gareth Baynam\, Clinical Geneticist\, Genetic Services of Western Australia \n6:30pm Shortening the diagnostic odyssey through newborn screening\nGeorgina Morton\, Founder and Chair\, ArchAngel MLD Trust \n6:45pm Harnessing the power of gene therapy after diagnosis\nProf Bobby Gaspar\, Honorary Clinical Professor\, Great Ormond Street Hospital and the UCL Institute of Child Health and CEO\, Orchard Therapeutics \n7:00pm Panel discussion \n7:15pm I am Number 17 Campaign\nDavid Rose\, Rare Disease Patient and Advocate from Rare Revolution Magazine \n7:30pm Winner of Student Voice Prize 2020 \n7:40pm Panel discussion\n8:00pm Close of meeting
URL:https://www.m4rd.org/event/the-unusual-suspects-2021/
LOCATION:Online
CATEGORIES:Conference,Networking,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/10/M4RD-RSM042-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20201127
DTEND;VALUE=DATE:20201129
DTSTAMP:20260430T015036
CREATED:20200320T150136Z
LAST-MODIFIED:20200320T150302Z
UID:6597-1606435200-1606607999@www.m4rd.org
SUMMARY:RareFest20
DESCRIPTION:FREE to attend\, RAREfest20 is a full day Cambridge Rare Disease Network festival featuring interactive hands-on exhibits showcasing cool science\, visionary technology\, and pioneering organisations improving lives and bringing hope to those affected by rare diseases.  \nAlongside the exhibition there’ll be inspiring talks from experts and powerful patient voices\, rare disease inspired art and films.
URL:https://www.m4rd.org/event/rarefest20/
LOCATION:Guildhall Cambridge\, Cambridge\, United Kingdom
CATEGORIES:Conference,exhibition,Networking,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/03/https-cdn.evbuc_.com-images-91443871-147790335965-1-original.20200207-185545-e1584716365180.jpeg
ORGANIZER;CN="CRDN":MAILTO:jo@camraredisease.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200515
DTEND;VALUE=DATE:20200517
DTSTAMP:20260430T015036
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:20260430T015036
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:20191011T133000
DTEND;TZID=Europe/London:20191011T163000
DTSTAMP:20260430T015036
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:20191008T100000
DTEND;TZID=Europe/London:20191008T170000
DTSTAMP:20260430T015036
CREATED:20190619T194009Z
LAST-MODIFIED:20190827T142944Z
UID:5250-1570528800-1570554000@www.m4rd.org
SUMMARY:The Manchester Rare Disease Showcase
DESCRIPTION:Findacure’s Rare Disease Showcases are a celebration of innovative rare disease projects across the UK. As a world leader in rare research\, exceptional examples of rare disease practice can be found all over the country. Their touring event series heads to local regions to give them the attention they deserve.\nAttendees can expect: \n\nPresentations from rare experts in Manchester’s local area\, including patients\, support groups\, clinicians and researchers.\nHighlights of excellent progress in academic\, healthcare\, industry and patient advocacy\nTwo lightning talk sessions for delegates to propose and share their own rare stories\nAmple patient group and charity exhibitors from across the UK\nDedicated time to network with North West England’s rare community\n\n  \nFindacure are offering a number of exhibition stands to patient organisations and charities completley free of charge. If you are interested in exhibiting\, please email maryrose@findacure.org.uk.
URL:https://www.m4rd.org/event/the-manchester-rare-disease-showcase/
LOCATION:The Bridgewater Hall\, Lower Mosley Street\, Manchester\, Lancashire\, M2 3WS\, United Kingdom
CATEGORIES:Networking,Showcase
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2019/06/manchester-Findacure-_AG28206-e1560972616183.png
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190923T083000
DTEND;TZID=Europe/London:20190923T173000
DTSTAMP:20260430T015036
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:20190904T180000
DTEND;TZID=Europe/London:20190904T200000
DTSTAMP:20260430T015036
CREATED:20190816T124209Z
LAST-MODIFIED:20190816T124209Z
UID:5724-1567620000-1567627200@www.m4rd.org
SUMMARY:Everything You Wanted to Know about Genomics but Were Afraid to Ask
DESCRIPTION:The event is produced by the Progress Educational Trust (PET)\, in partnership with Health Education England and its Genomics Education Programme. \nIt will be co-chaired by Sarah Norcross and Dr Anneke Seller\, with speakers including Elizabeth Alexander\, Professor Jill Clayton-Smith\, Dr Simon Ramsden and Sabine Starr. \nIn the PET tradition\, much of this event’s running time will be devoted to letting the audience put questions and comments to the speakers. \nThe event is taking place during NHS England’s Health and Care Innovation Expo\, which is being held at a nearby venue. But attendance is open to everyone\, regardless of whether or not you are registered to attend the Expo.
URL:https://www.m4rd.org/event/everything-you-wanted-to-know-about-genomics-but-were-afraid-to-ask/
LOCATION:Manchester’s Science and Industry Museum\, Science and Industry Museum (Garratt Suite) Liverpool Road\, Manchester\, M3 4FP\, United Kingdom
CATEGORIES:Networking,Showcase
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/08/genomics-e1565959314340.jpg
ORGANIZER;CN="Progress Educational Trust (PET)":MAILTO:admin@progress.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190808T184500
DTEND;TZID=Europe/London:20190808T210000
DTSTAMP:20260430T015036
CREATED:20190619T182057Z
LAST-MODIFIED:20190619T183518Z
UID:5238-1565289900-1565298000@www.m4rd.org
SUMMARY:The Cambridge Rare Disease Showcase
DESCRIPTION:Findacure’s  Rare Disease Showcases are a celebration of innovative rare disease projects across the UK. As a world leader in rare research\, exceptional examples of rare disease practice can be found all over the country. Their touring event series heads to local regions to give them the attention they deserve.\nAttendees can expect: \n\nQuick-fire lightning talks proposed and delivered by registered delegates\nHighlights of developments in the East of England\nOpportunities to build relationships with passionate and dedicated members from all sectors of the rare disease community\nChances to make connections with representatives of Cambridge Biomedical Campus and Cambridge University\nDelicious canapes and refreshments\n\nUpon registration\, all delegates will have the opportunity to propose a five-minute talk to be presented at the showcase. If you have a story to tell\, an innovative new idea or a project to share – now’s your chance! \nAttendance is free to patients patient groups and students\, £10 for academics and clinicians\, and £20 for industry.
URL:https://www.m4rd.org/event/the-cambridge-rare-disease-showcase/
LOCATION:Espresso Library\, 210 East Road\, Cambridge\, Cambridgeshire\, CB1 1BG\, United Kingdom
CATEGORIES:Networking,Showcase
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2019/06/Cambridge-Rare-Disease-showcase-MG_5957-e1560968626243.png
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190710T133000
DTEND;TZID=Europe/London:20190710T170000
DTSTAMP:20260430T015036
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
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