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X-WR-CALDESC:Events for Medics For Rare Disease (clone)
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DTSTART:20190331T010000
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210610T150000
DTEND;TZID=Europe/London:20210610T210000
DTSTAMP:20260604T064333
CREATED:20210507T100350Z
LAST-MODIFIED:20210507T100350Z
UID:7916-1623337200-1623358800@staging.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://staging.m4rd.org/event/precision-medicine-rare-disease/
LOCATION:ONLINE
CATEGORIES:Drug repurposing,Public health,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://staging.m4rd.org/wp-content/uploads/2021/05/Screenshot-2021-05-07-at-10.54.12.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210513T170000
DTEND;TZID=Europe/London:20210513T180000
DTSTAMP:20260604T064333
CREATED:20210505T085830Z
LAST-MODIFIED:20210505T090258Z
UID:7882-1620925200-1620928800@staging.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://staging.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://staging.m4rd.org/wp-content/uploads/2021/05/68e77ee46c0acec5bd565a4b7a69741c.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210510T130000
DTEND;TZID=Europe/London:20210510T140000
DTSTAMP:20260604T064333
CREATED:20210416T092914Z
LAST-MODIFIED:20210416T093459Z
UID:7821-1620651600-1620655200@staging.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://staging.m4rd.org/event/rcph-bpsu-series-bechets-syndrome-in-children-and-young-people/
LOCATION:ONLINE
CATEGORIES:Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://staging.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;VALUE=DATE:20210426
DTEND;VALUE=DATE:20210427
DTSTAMP:20260604T064333
CREATED:20210416T093905Z
LAST-MODIFIED:20210416T093905Z
UID:7830-1619395200-1619481599@staging.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://staging.m4rd.org/event/covid-19-from-a-paediatric-perspective-an-online-bpsu-phe-symposia-series/
CATEGORIES:BPSU,COVID-19,Public health,Research,Webinar
ATTACH;FMTTYPE=image/png:https://staging.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:20210421T110000
DTEND;TZID=Europe/London:20210421T123000
DTSTAMP:20260604T064333
CREATED:20210416T095021Z
LAST-MODIFIED:20210416T095359Z
UID:7836-1619002800-1619008200@staging.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://staging.m4rd.org/event/ensuring-inclusive-communications-around-genetics/
LOCATION:ONLINE
CATEGORIES:Genetics,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://staging.m4rd.org/wp-content/uploads/2021/04/Genetics-banner-image3.png
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210416T080000
DTEND;TZID=Europe/London:20210416T170000
DTSTAMP:20260604T064333
CREATED:20210416T094635Z
LAST-MODIFIED:20210416T094635Z
UID:7833-1618560000-1618592400@staging.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://staging.m4rd.org/event/east-paediatric-genomics-forum-drawing-family-histories-like-a-pro/
CATEGORIES:Genetics,Research,Webinar
ATTACH;FMTTYPE=image/png:https://staging.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:20210325T123000
DTEND;TZID=Europe/London:20210325T133000
DTSTAMP:20260604T064333
CREATED:20210319T154435Z
LAST-MODIFIED:20210319T154435Z
UID:7797-1616675400-1616679000@staging.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://staging.m4rd.org/event/east-paediatric-genomics-forum/
LOCATION:ONLINE
CATEGORIES:Genomics,Webinar
ATTACH;FMTTYPE=image/png:https://staging.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:20210322T171500
DTEND;TZID=Europe/London:20210322T180000
DTSTAMP:20260604T064333
CREATED:20210318T114824Z
LAST-MODIFIED:20210318T114824Z
UID:7791-1616433300-1616436000@staging.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://staging.m4rd.org/event/inaugural-rare-disease-nurse-network-webinar/
LOCATION:ONLINE
CATEGORIES:Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://staging.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:20210304T180000
DTEND;TZID=Europe/London:20210304T193000
DTSTAMP:20260604T064333
CREATED:20210224T150707Z
LAST-MODIFIED:20210224T150707Z
UID:7717-1614880800-1614886200@staging.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://staging.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://staging.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:20201214T173000
DTEND;TZID=Europe/London:20201214T173000
DTSTAMP:20260604T064333
CREATED:20201207T201909Z
LAST-MODIFIED:20201207T201909Z
UID:7439-1607967000-1607967000@staging.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://staging.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://staging.m4rd.org/wp-content/uploads/2020/12/IMG_0392.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20201203T170000
DTEND;TZID=Europe/London:20201203T180000
DTSTAMP:20260604T064333
CREATED:20201009T083655Z
LAST-MODIFIED:20201009T083655Z
UID:7212-1607014800-1607018400@staging.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://staging.m4rd.org/event/the-genomic-revolution-a-practical-guide-to-what-you-cant-afford-not-to-know-part-1/
CATEGORIES:Genomics,Webinar
ATTACH;FMTTYPE=image/jpeg:https://staging.m4rd.org/wp-content/uploads/2019/08/genomics-e1565959314340.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20201111T110000
DTEND;TZID=Europe/London:20201112T120000
DTSTAMP:20260604T064333
CREATED:20201009T082949Z
LAST-MODIFIED:20201009T082949Z
UID:7210-1605092400-1605182400@staging.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://staging.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:20260604T064333
CREATED:20200530T124325Z
LAST-MODIFIED:20200530T124959Z
UID:6798-1592829000-1592832600@staging.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://staging.m4rd.org/event/covid-19-and-rare-diseases-risks-and-opportunities-posed-by-the-pandemic/
LOCATION:Webinar
CATEGORIES:Rare Diseases,Webinar
END:VEVENT
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