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DTSTART;TZID=Europe/London:20200128T180000
DTEND;TZID=Europe/London:20200128T193000
DTSTAMP:20260405T003825
CREATED:20200121T173706Z
LAST-MODIFIED:20200121T195956Z
UID:6194-1580234400-1580239800@www.m4rd.org
SUMMARY:Hit and Miss: Genetic diagnosis\, misdiagnosis and learning
DESCRIPTION:A potpourri of genetic diagnosis\, misdiagnosis and learning experiences\nKCL Medical Genetics Society’s second lecture of the year will held by Dr Willie Reardon\, sharing his experience as a Consultant Clinical Geneticist at Great Ormond St Hospital for Children\, Hospital for Sick Children Toronto and Our Lady’s Children’s Hospital.
URL:https://www.m4rd.org/event/hit-and-miss-genetic-diagnosis-misdiagnosis-and-learning/
LOCATION:Kings College London Guys Campus\, New Hunt's House\, London\, SE1 9RT\, United Kingdom
CATEGORIES:Genetics,Lectures
ORGANIZER;CN="KCL Medical Genetics Society":MAILTO:kclmedgensoc@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200203T180000
DTEND;TZID=Europe/London:20200203T210000
DTSTAMP:20260405T003825
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:20200219T123000
DTEND;TZID=Europe/London:20200219T180000
DTSTAMP:20260405T003825
CREATED:20190911T203158Z
LAST-MODIFIED:20191224T095107Z
UID:5812-1582115400-1582135200@www.m4rd.org
SUMMARY:The unusual suspects: rare diseases in everyday medicine
DESCRIPTION:Medics 4 Rare Diseases and the RSM will bring a faculty of top speakers to explore how rare diseases are relevant in everyday clinical medicine\nThis event is aimed at clinicians at all stages of their training to explain why rare diseases are important to everyday medicine. We will explore how generalists can approach patients with rare diseases and become advocates for them. We will hear from a patient who suffered a long and arduous journey to diagnosis as a child and now uses her illustrations to tell her story. We will also learn about drug repurposing. \nTopics include:\n\nHow rare diseases are relevant to every doctor’s career in medicine\nA patient’s perspective\nReducing the diagnostic odyssey in rare diseases\nDrug Repurposing in Rare Diseases\nHow to be a rare advocate/ally\nHow the work of Medics 4 Rare Diseases and the RSM Genetics Section play a role in rare disease education\n\nThis year we are really excited to be able to provide a limited number of student travel bursaries for our annual symposium at The Royal Society of Medicine to enable students who live outside of London to attend our event.  Please see our website for T&Cs\nEarly Bird Rates available until 8 January\nRSM member: £15-£25 \nNon member: £20-£30 \nRegistration starts at 12.30 and the event begins at 1pm. \nBOOK NOW
URL:https://www.m4rd.org/event/the-unusual-suspects-rare-diseases-in-everyday-medicine/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:Conference
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2018/10/M4RD-Annual-Symposium.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200224T100000
DTEND;TZID=Europe/London:20200224T180000
DTSTAMP:20260405T003825
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:20200313T100000
DTEND;TZID=Europe/London:20200313T153000
DTSTAMP:20260405T003825
CREATED:20200221T123807Z
LAST-MODIFIED:20200221T123807Z
UID:6477-1584093600-1584113400@www.m4rd.org
SUMMARY:Medicine and Me: Living with pulmonary fibrosis
DESCRIPTION:Jointly organised with Action for Pulmonary Fibrosis\, this meeting will give you an understanding of what it is like to live with Idiopathic Pulmonary Fibrosis (IPF) from people living with the disease.\nPulmonary fibrosis (PF) is thought to affect around 70\,000 people in the UK. One of the most aggressive and common forms of PF is Idiopathic Pulmonary Fibrosis (IPF). Idiopathic means it has no known cause. IPF normally affects people over 50 and is slightly more common in men than women. There are limited treatments and there is no cure. Life expectancy can be between three to five years following diagnosis\, and around 6\,000 people die from it every year in the UK. \nLearn more about current approaches to diagnosis\, treatment and management of IPF from the perspective of patients\, their carers and clinicians\, as well as gaining an insight into the psychological and emotional wellbeing of those living with IPF. We’ll also explore the cutting edge research into improving outcomes and palliation\, as we consider areas of inquiry likely to deliver step changes in treatments.
URL:https://www.m4rd.org/event/medicine-and-me-living-with-pulmonary-fibrosis/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/02/4e894465665ea68bb26392254b8e37dd8d4bc414-e1582288181148.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200515
DTEND;VALUE=DATE:20200517
DTSTAMP:20260405T003825
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:20200622T123000
DTEND;TZID=Europe/London:20200622T133000
DTSTAMP:20260405T003825
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;TZID=Europe/London:20200716T150000
DTEND;TZID=Europe/London:20200716T154500
DTSTAMP:20260405T003825
CREATED:20200710T151519Z
LAST-MODIFIED:20200710T151519Z
UID:6885-1594911600-1594914300@www.m4rd.org
SUMMARY:Educating physicians in rare disease - Reducing the diagnostic odyssey and improving outcomes
DESCRIPTION:This webinar will introduce Medics 4 Rare Diseases whose mission is to drive an attitude change towards rare diseases amongst medical students and doctors in training. In addition Lucy McKay\, CEO of Medics 4 Rare Diseases and Gavin Jones\, Director of Rare Disease\, will be discussing core educational principles required to deliver better patient experience and outcomes for those living with rare diseases.
URL:https://www.m4rd.org/event/educating-physicians-in-rare-disease-reducing-the-diagnostic-odyssey-and-improving-outcomes/
LOCATION:Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/07/Gavin-and-Lucy-McKay-005.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200926
DTEND;VALUE=DATE:20200927
DTSTAMP:20260405T003825
CREATED:20200914T195355Z
LAST-MODIFIED:20200914T195355Z
UID:7160-1601078400-1601164799@www.m4rd.org
SUMMARY:Wolfram Syndrome virtual conference
DESCRIPTION:Planning is ongoing for The Wolfram Syndrome UK’s 9th annual conference\, which this year will now be a virtual conference on Zoom taking place over two days: Saturday 19th and Saturday 26th September.\n19th September\n2.00-3.00 pm Urology Presentation – Mr Liam McCarthy from Birmingham Children’s Hospital \n  \n26th September\n9.30-10.15am Ophthalmology workshop #1 – Talia Treen from Queen Elizabeth Hospital\, Birmingham \n10.30-11.15am Ophthalmology workshop #2 – Talia Treen from Queen Elizabeth Hospital\, Birmingham \n11.30am-12.15pm Speech and Language workshop for swallowing/choking – Georgie Smith from Queen Elizabeth Hospital \n1.00-2.00pm Lifelong treatment with GLP1 receptor agonist in rat model of Wolfram syndrome – Drs Mario Plaas and Anton Terasmaa\, Estonia \n2.15-3.00pm TREATWolfram Update – Prof Tim Barrett and Dr Ben Wright – Birmingham Children’s Hospital and Queen Elizabeth Hospital\, Birmingham. \n3.15-4.15pm Optic nerve involvement in Wolfram syndrome – Mr Patrick Yu Wai Man\, Cambridge University and Moorfields Eye Hospital. \nHow to register for the workshops has been sent out by email to WSUK members only due to restrictions on numbers.  Programme is subject to change.  Email admin@wolframsyndrome.co.uk for more details on how to register for each webinar.
URL:https://www.m4rd.org/event/wolfram-syndrome-virtual-conference/
LOCATION:Online
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/09/DSCN1408-scaled-e1600112695312.jpg
ORGANIZER;CN="Wolfram Syndrome UK":MAILTO:admin@wolframsyndrome.co.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20201111T110000
DTEND;TZID=Europe/London:20201112T120000
DTSTAMP:20260405T003825
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/
LOCATION:Cheshire
CATEGORIES:Rare Diseases,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20201117
DTEND;VALUE=DATE:20201120
DTSTAMP:20260405T003825
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/
LOCATION:Cheshire
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;VALUE=DATE:20201127
DTEND;VALUE=DATE:20201129
DTSTAMP:20260405T003825
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;TZID=Europe/London:20201203T170000
DTEND;TZID=Europe/London:20201203T180000
DTSTAMP:20260405T003825
CREATED:20201009T083655Z
LAST-MODIFIED:20201009T083655Z
UID:7212-1607014800-1607018400@www.m4rd.org
SUMMARY:The genomic revolution: A practical guide to what you can’t afford not to know - Part 1
DESCRIPTION:This exciting 3-part webinar series sees representatives from NHS England give an up-to-date outline of the changes in genomic infrastructure which will transform the provision of genomic testing in the NHS.\nIn this first webinar\, top speakers will help clinicians understand how the increasing availability of state of the art genomic testing in the NHS will impact their day to day clinical practice. \nWebinar topics include: \n\nDiscuss recent advances in genomic testing and how they have been integrated into clinical testing pathways within the NHS\nUnderstand how genomic tests are generated\nFamiliarise yourself with the process of the clinical interpretation of genomic results
URL:https://www.m4rd.org/event/the-genomic-revolution-a-practical-guide-to-what-you-cant-afford-not-to-know-part-1/
LOCATION:Cheshire
CATEGORIES:Genomics,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/08/genomics-e1565959314340.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20201214T173000
DTEND;TZID=Europe/London:20201214T173000
DTSTAMP:20260405T003825
CREATED:20201207T201909Z
LAST-MODIFIED:20201207T201909Z
UID:7439-1607967000-1607967000@www.m4rd.org
SUMMARY:Being rare: a patient tale of being diagnosed in an OSCE
DESCRIPTION:Wyburn-Mason syndrome. Ever heard of it? Dan Jeffries has\, and his insightful talk explores what it’s like living with one of the world’s rarest medical conditions – to then discover you have another one.\n\nBarts & The London Students for Rare Diseases are excited to invite you to their first online event of the year!\n\nThey’ll  be hearing from Dan Jeffries\, a well-known figure in the rare disease community. Dan is a Trustee for Medics 4 Rare Diseases\, a Volunteer Ambassador for The Pituitary Foundation and has spoken at numerous rare disease events around the world.\n\nThe event will be hosted on Zoom – please sign up via the form below and we will send you a link.
URL:https://www.m4rd.org/event/being-rare-a-patient-tale-of-being-diagnosed-in-an-osce/
LOCATION:ONLINE
CATEGORIES:Rare Diseases,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/12/IMG_0392.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210223T120000
DTEND;TZID=Europe/London:20210223T130000
DTSTAMP:20260405T003825
CREATED:20210220T125554Z
LAST-MODIFIED:20210220T130824Z
UID:7707-1614081600-1614085200@www.m4rd.org
SUMMARY:Refsum Disease from an Ophthalmology Perspective
DESCRIPTION:Dr. Bart Leroy\, MD\, PhD will present the Ophthalmology side of Refsum Disease and the benefits of early diagnosis by clinicians\nAdult Refsum Disease is a genetic disorder impacting the metabolism of phytanic acid. The key symptoms are Retinitis Pigmentosa\, loss of smell\, hearing loss\, numbness\, balance issues\, itchy skin\, shortened fingers and toes. It is one of the few causes of Retinitis Pigmentosa that has a proven dietary therapy to slow vision and hearing loss. Therefore\, early diagnosis is critical. \n  \nRegister NOW for this FREE online event \n 
URL:https://www.m4rd.org/event/refsum-disease-from-an-ophthalmology-perspective/
LOCATION:ONLINE
CATEGORIES:Lectures,Ophthalmology,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/02/d703b7_8d1e2155accc49a0a38cfbee716839b5mv2.jpg
ORGANIZER;CN="Global DARE Foundation":MAILTO:info@GlobalDAREFoundation.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210224T180000
DTEND;TZID=Europe/London:20210224T200000
DTSTAMP:20260405T003825
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;TZID=Europe/London:20210304T180000
DTEND;TZID=Europe/London:20210304T193000
DTSTAMP:20260405T003825
CREATED:20210224T150707Z
LAST-MODIFIED:20210224T150707Z
UID:7717-1614880800-1614886200@www.m4rd.org
SUMMARY:Rare diseases in primary care - the needles in the haystack (but there are a lot of needles!)
DESCRIPTION:Dr Will Evans will explain how rare diseases are not only relevant to general practice but how GPs are best placed to holistically support people with rare diseases and their families.\nBarts & The London Rare Disease Society are very excited to be joined by Dr Will Evans\, a GP in Leeds\, an academic in the PRISM group at the University of Nottingham and the clinical lead at Mendelian\, a health technology company using data driven approaches to shorten the diagnostic odyssey for rare disease patients. \nWill’s interests are in personalised medicine\, the adoption of genomic technologies in primary care and improving the diagnosis and care of rare disease patients. Will’s eldest son has an ultra-rare disease\, Niemann-Pick disease\, type C\, and is the chairman of the board of trustees of the national charity NPUK. \n  \nComplete this form to book your place
URL:https://www.m4rd.org/event/rare-diseases-in-primary-care-the-needles-in-the-haystack-but-there-are-a-lot-of-needles/
LOCATION:ONLINE
CATEGORIES:Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/02/1.png
ORGANIZER;CN="Barts & The London Rare Disease Society":MAILTO:s4rd@bartslondon.com
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210322T171500
DTEND;TZID=Europe/London:20210322T180000
DTSTAMP:20260405T003825
CREATED:20210318T114824Z
LAST-MODIFIED:20210318T114824Z
UID:7791-1616433300-1616436000@www.m4rd.org
SUMMARY:Inaugural Rare Disease Nurse Network Webinar
DESCRIPTION:Are you a nurse/allied health professional working or interested in rare diseases?\nRDNN are building a community to support each other\, share stories and learn from their peers to improve the care they offer to rare disease patients and their families. \nJoin them for their first webinar\, featuring Liz Morris\, Lead Specialist Nurse in the Lysosomal Disorders Service at Addenbrookes Hospital\, Cambridge. Liz will be discussing the process of setting up and running Commissioned Services in Rare Disease\, covering the trials\, tribulations\, pitfalls and benefits. \nIf you are interested in Rare Disease services\, setting up Commissioned Services or are working in the Rare Disease environment\, this webinar is for you. Can’t make the live event\, not to worry\, if you register RDNN will share a recording on their website – www.RDNN.org and let you know when it is live. \nConnect on Twitter: #@NurseRare
URL:https://www.m4rd.org/event/inaugural-rare-disease-nurse-network-webinar/
LOCATION:ONLINE
CATEGORIES:Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/03/RDNN-22_03_2021-Facebook.png
ORGANIZER;CN="Rare Disease Nurse Network":MAILTO:Helena.baker@rdnn.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210322T180000
DTEND;TZID=Europe/London:20210322T190000
DTSTAMP:20260405T003825
CREATED:20210312T102537Z
LAST-MODIFIED:20210318T174644Z
UID:7758-1616436000-1616439600@www.m4rd.org
SUMMARY:Rare Diseases in Dermatology: Parent perspective - life with Xeroderma Pigmentosum
DESCRIPTION:Nicola Miller will be talking about her experiences of caring for her son\, who has a rare skin condition\, Xeroderma Pigmentosum\, and how clinicians can improve care for children with rare conditions and their families.\nBarts & The London Rare Disease Society are excited to welcome Nicola Miller\, founder of the Teddington Trust\, a rare disease patient support charity\, and Editor of Rare Revolution magazine to their next webinar. \nComplete this form to book your place
URL:https://www.m4rd.org/event/rare-diseases-in-dermatology-parent-perspective-life-with-xeroderma-pigmentosum/
LOCATION:ONLINE
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/03/s2.png
ORGANIZER;CN="Barts & The London Rare Disease Society":MAILTO:s4rd@bartslondon.com
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210325T123000
DTEND;TZID=Europe/London:20210325T133000
DTSTAMP:20260405T003825
CREATED:20210319T154435Z
LAST-MODIFIED:20210319T154435Z
UID:7797-1616675400-1616679000@www.m4rd.org
SUMMARY:East Paediatric Genomics Forum
DESCRIPTION:Paediatricians and Neonatologists from East of England and East Midlands please join to learn more about the Genomic Medicine Service and the testing services the East Genomics Laboratory Hub provides. \nDuring this first session you will: \n\nGain an overview of the Genomic Medicine Service\nUnderstand how to order a test from the test directory\nMeet scientists from the East Genomics Laboratory Hub\n\nJoin the meeting here – you will be asked to register. \nThe East NHS Genomics Lab Hub are looking for your input to shape these sessions going forward so please let them know if you have anything in particular you would like to share or discuss.
URL:https://www.m4rd.org/event/east-paediatric-genomics-forum/
LOCATION:ONLINE
CATEGORIES:Genomics,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/03/Genomics.png
ORGANIZER;CN="East NHS Genomic Laboratory Hub":MAILTO:Laura.Gallwey@addenbrookes.nhs.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210408T180000
DTEND;TZID=Europe/London:20210408T193000
DTSTAMP:20260405T003825
CREATED:20210312T115744Z
LAST-MODIFIED:20210312T115900Z
UID:7780-1617904800-1617910200@www.m4rd.org
SUMMARY:Medicine and Me: Living with pulmonary fibrosis\, looking to the future
DESCRIPTION:Jointly organised with Action for Pulmonary Fibrosis\, this meeting will give you an understanding of what it is like to live with Idiopathic Pulmonary Fibrosis (IPF) from people living with the disease.\nPulmonary fibrosis (PF) is thought to affect around 70\,000 people in the UK. One of the most aggressive and common forms of PF is Idiopathic Pulmonary Fibrosis (IPF). \nThis webinar will discuss the current approaches to diagnosis\, active treatment and symptom management of IPF from the perspective of patients and their carers and explore the latest cutting edge research. \nRegister now
URL:https://www.m4rd.org/event/medicine-and-me-living-with-pulmonary-fibrosis-looking-to-the-future/
LOCATION:ONLINE
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/03/a3b02dcf7b64aaca8ed015c70105d5e1f160fad8.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210416T080000
DTEND;TZID=Europe/London:20210416T170000
DTSTAMP:20260405T003825
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
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210421T110000
DTEND;TZID=Europe/London:20210421T123000
DTSTAMP:20260405T003825
CREATED:20210416T095021Z
LAST-MODIFIED:20210416T095359Z
UID:7836-1619002800-1619008200@www.m4rd.org
SUMMARY:Ensuring inclusive communications around genetics
DESCRIPTION:Genetics is complex\, and talk of genetics\, and even science\, can turn many people off from engaging with clinicians or self-management of their conditions.\nFindacure is teaming up with charity Breaking Down Barriers to deliver an informative webinar on understanding genetics in the rare disease field. \n  \nThis webinar will:  \n\nHighlight the role of genetics as both a tool to access diagnoses and understanding of rare conditions\, and a barrier to understand and discuss these diseases and their inheritance. \nHighlight case studies of what others in the rare community are doing to support with genetic diagnoses \nSignpost to pre-existing resources that your patient organisation can access
URL:https://www.m4rd.org/event/ensuring-inclusive-communications-around-genetics/
LOCATION:ONLINE
CATEGORIES:Genetics,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/04/Genetics-banner-image3.png
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210426
DTEND;VALUE=DATE:20210427
DTSTAMP:20260405T003825
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:20210510T130000
DTEND;TZID=Europe/London:20210510T140000
DTSTAMP:20260405T003825
CREATED:20210416T092914Z
LAST-MODIFIED:20210416T093459Z
UID:7821-1620651600-1620655200@www.m4rd.org
SUMMARY:RCPH-BPSU series: Bechet's Syndrome in children and young people
DESCRIPTION:Behçet’s syndrome is a rare multi-system inflammatory condition characterised by recurrent oral ulceration\, genital ulceration\, eye and skin involvement.  In this webinar\, the panel of speakers will present the findings of the 2017 BPSU study.\n  \nSpeakers:\n\nDr Clare Pain\, Consultant Paediatric Rheumatologist\, Alder Hey Children’s NHS Foundation Trust\, Lead of Paediatric Behcet’s service at Alder Hey and chief investigator on BPSU Behcet’s study\nDr Daniel Finn – StR in Oral Medicine\, Liverpool University Dental Hospital\nProfessor Robert Moots\nProfessor Paul Brogan\n\nLearning outcomes:\n\nUnderstanding how UK children are affected by Behçet’s syndrome\nImprove knowledge of differential diagnoses and investigations of Behçet’s like presentations including recurrent oral ulceration\nManagement of Behçet’s syndrome in children and young people\nThe role of genetic testing and monogenic mimics\nHow to manage recurrent oral ulceration
URL:https://www.m4rd.org/event/rcph-bpsu-series-bechets-syndrome-in-children-and-young-people/
LOCATION:ONLINE
CATEGORIES:Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/04/Untitled-design-3.png
ORGANIZER;CN="RCPCH-BPSU":MAILTO:events@rcpch.ac.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210513T170000
DTEND;TZID=Europe/London:20210513T180000
DTSTAMP:20260405T003825
CREATED:20210505T085830Z
LAST-MODIFIED:20210505T090258Z
UID:7882-1620925200-1620928800@www.m4rd.org
SUMMARY:Mobilising pathways to accommodate new transformative treatments - using CF as a case study
DESCRIPTION:Join OPEN HEALTH for a live webinar exploring the journey of RARE pathway transformation and the introduction of disease-modifying treatments as part of their Rare Thoughts and Outcomes series.\nLearn from the experiences of patients\, parents\, and physicians about how cystic fibrosis pathways are rapidly adapted and what learnings can be applied to other rare diseases to strive for positive outcomes for all. \nHopefully many more rare diseases will soon have disease modifying treatments that have the potential to transform patient lives. However if diagnostic\, treatment and management pathways are not ready or fit for purpose then patient access will be delayed. This panel will discuss recent experiences in Cystic Fibrosis during a time when disease modifying agents were introduced. The panel will discuss this revolution in the treatment of this disease through the eyes of patients\, parents and physicians to explore what can be applied to accelerate pathway development in other rare diseases. \nPanelists: \nTracey Daniels – Clinical Lead\, York Teaching Hospital Foundation Trust \nElla Balasa – Patient Advocate and Health Engagement Consultant \nEleanor Thistleton – Parent and Medical Communications Expert\, OPEN Health \nTom Smith – Patient Advocate and Life Science Public Engagement Expert \nPanel Chair – Gavin Jones\, Global Advisor\, Rare Diseases\, OPEN Health
URL:https://www.m4rd.org/event/mobilising-pathways-to-accommodate-new-transformative-treatments-using-cf-as-a-case-study/
LOCATION:ONLINE
CATEGORIES:Rare Diseases,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/05/68e77ee46c0acec5bd565a4b7a69741c.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210610T150000
DTEND;TZID=Europe/London:20210610T210000
DTSTAMP:20260405T003825
CREATED:20210507T100350Z
LAST-MODIFIED:20210507T100350Z
UID:7916-1623337200-1623358800@www.m4rd.org
SUMMARY:Precision Medicine & Rare Disease
DESCRIPTION:If you work in rare diseases or rare disorders\, this conference is one you cannot miss. Come and hear talks and discussions by leaders in academia\, biotech\, pharmaceuticals\, diagnostics\, clinical research\, informatics\, healthcare and regulatory bodies at the world’s most informative virtual conference.\nPatients living with rare diseases are often persistently misdiagnosed or undiagnosed\, potentially resulting in no treatment at all or treatments that are ineffective or unsafe.  Due to the lack of definitive diagnostics or efficacious and safe therapies\, foundations and research centers have been raising funds for re-purposing existing therapeutics or developing new drugs (typically classified with an orphan drug status).  As the development of biomarkers and genetic signatures continues to progress\, techniques and technologies are anticipated to become more precise and comprehensive\, thereby reducing the time to rare disease diagnoses. \nThis conference will cover the following topics and more: \n\nExperiences from all parties – patient journeys\, doctors’ consultations\, payer perspectives\nRecruiting rare disease patients for clinical trials\nTools that allow online access for patients\, doctors\, data sets\, multi-participant meetings\nChallenges of treating rare disease patients and families during a pandemic\nHow large\, medium\, and small companies in pharma\, clinical\, and diagnostic groups are addressing rare disease challenges\, including translational medicine\, data analysis\, economic modeling\, real-world data capture
URL:https://www.m4rd.org/event/precision-medicine-rare-disease/
LOCATION:ONLINE
CATEGORIES:Drug repurposing,Public health,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/05/Screenshot-2021-05-07-at-10.54.12.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210611T120000
DTEND;TZID=Europe/London:20210611T133000
DTSTAMP:20260405T003825
CREATED:20210416T093427Z
LAST-MODIFIED:20210416T093427Z
UID:7826-1623412800-1623418200@www.m4rd.org
SUMMARY:RCPH-BPSU series: Type 2 Diabetes in children and young people
DESCRIPTION:There is growing evidence that the increase in childhood obesity has resulted in cases of Type 2 diabetes being diagnosed in younger age groups.\nAlthough the incidence of Type 2 diabetes is increasing\, the condition is still relatively rare in children\, and therefore the symptoms and clinical presentation of it in children may not always be clear to paediatricians who have not encountered the disease in children before. This can cause late and misdiagnoses of the condition and this often causes additional emotional and financial burdens on the patients and their families. \nIn this webinar\, Prof Julian Hamilton-Sheild and Prof Timothy Barrett will present the findings of the 2015-16 BPSU study.
URL:https://www.m4rd.org/event/rcph-bpsu-series-type-2-diabetes-in-children-and-young-people/
LOCATION:ONLINE
CATEGORIES:Child and Young Person,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/04/Untitled-design-4.png
ORGANIZER;CN="RCPCH-BPSU":MAILTO:events@rcpch.ac.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210615
DTEND;VALUE=DATE:20210617
DTSTAMP:20260405T003825
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:20210621
DTEND;VALUE=DATE:20210726
DTSTAMP:20260405T003825
CREATED:20210225T100440Z
LAST-MODIFIED:20210225T100440Z
UID:7726-1624233600-1627257599@www.m4rd.org
SUMMARY:EURORDIS Summer School
DESCRIPTION:EURORDIS Summer School aims to provide rare disease patient advocates with the knowledge and skills needed to become experts in medicines research and development. Since 2015\, researchers are also welcome to attend the Summer School.\nThe EURORDIS Summer School training covers topics including: clinical trials methodology\, clinical research\, ethics in medicines development\, regulatory affairs\, health technology assessment and marketing authorisation. \nThe 2021 edition of the EURORDIS Summer School will take place on 21-25 June 2020\, exceptionally online\, due to the COVID-19 pandemic. \nAhead of the online training week\, participants take part in 3 pre-training webinars and complete a selection of the online modules listed below. \nTake part in free online training
URL:https://www.m4rd.org/event/eurordis-summer-school/
LOCATION:ONLINE
CATEGORIES:Rare Diseases,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/02/summerschool.jpg
END:VEVENT
END:VCALENDAR