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X-WR-CALDESC:Events for Medics For Rare Disease
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210408T180000
DTEND;TZID=Europe/London:20210408T193000
DTSTAMP:20260405T134323
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:20260405T134323
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/
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:20260405T134323
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:20260405T134323
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/
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:20260405T134323
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:20260405T134323
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:20260405T134323
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:20260405T134323
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:20260405T134323
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:20260405T134323
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
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210622T173000
DTEND;TZID=Europe/London:20210622T183000
DTSTAMP:20260405T134323
CREATED:20210430T125840Z
LAST-MODIFIED:20210430T125840Z
UID:7876-1624383000-1624386600@www.m4rd.org
SUMMARY:Stuart Green Memorial Lecture 2021
DESCRIPTION:Dr Stuart Green was a consultant at Birmingham Children’s Hospital who set up the Paediatric Neurology department. He was known internationallly for his expertise and was loved and respected by patients and colleagues alike for his kindness\, wit and wisdom.\nThis public lecture set up in his memory takes place at Birmingham Children’s Hospital\, every year in June and is appropriate also for a non-specialist audience. \nThe 2021 lecture will be held as a virtual event on Tuesday 22nd June 5.30-6.30pm. Young author and former BCH patient Sarah Lippett will talk about her experience of growing up with a rare disease as illustrated in her award-winning graphic novel “A puff of smoke” http://www.crayonlegs.com/portfolio/a-puff-of-smoke/. \nYou can find out more about the Stuart Green Memorial Fund at https://bwc.nhs.uk/stuart-green-memorial-lectures-and-bursary/
URL:https://www.m4rd.org/event/stuart-green-memorial-lecture-2021/
LOCATION:ONLINE
CATEGORIES:Lectures,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/04/Screenshot-2021-04-30-at-13.51.29.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210630T093000
DTEND;TZID=Europe/London:20210630T153000
DTSTAMP:20260405T134323
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:20210708T100000
DTEND;TZID=Europe/London:20210708T120000
DTSTAMP:20260405T134323
CREATED:20210705T191725Z
LAST-MODIFIED:20210705T191725Z
UID:8246-1625738400-1625745600@www.m4rd.org
SUMMARY:Public Dialogue on Whole Genome Sequencing for Newborn Screening
DESCRIPTION:An online event to find out about a nationwide public dialogue on the implications of using whole genome sequencing for newborn screening.\n\n\n\n\n\n\n\nOne hundred and thirty members of the public from around the UK have taken part in a dialogue about the implications for the NHS and society of using whole genome sequencing for newborn screening. The dialogue was commissioned by Genomics England and the UK National Screening Committee\, co-funded and supported by UKRI’s Sciencewise programme. Come and hear what the dialogue has told us about the attitudes\, aspirations and concerns of the public about genomics and newborn screening. What are the values and principles that inform these views? How do we trade off potential harms with potential benefits for the child\, the parents\, the wider family\, the NHS and society more broadly? What might a newborn screening programme using genomics look like? What safeguards and information are needed?
URL:https://www.m4rd.org/event/public-dialogue-on-whole-genome-sequencing-for-newborn-screening/
LOCATION:ONLINE
CATEGORIES:Conference,Genetics,Genomics,Public health,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/07/BCFE2D38-DFB4-4457-A7A7-718DDE97F926.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210726T173000
DTEND;TZID=Europe/London:20210726T183000
DTSTAMP:20260405T134323
CREATED:20210705T131344Z
LAST-MODIFIED:20210705T131344Z
UID:8241-1627320600-1627324200@www.m4rd.org
SUMMARY:The genetics of primary care
DESCRIPTION:The eleventh webinar in The genetics of… series from the Royal Society of Medicine. This webinar will equip attendees with the clinical skills required to help patients presenting with common genetic situations. \nFrequent challenges for primary care workers include identifying higher cancer risks in patients\, spotting a child with a rare disease and understanding consumer genetic test reports. This hour-long webinar will provide you with the clinical know-how you need to tackle these frequent scenarios\, with the opportunity to ask questions of the panel. \nDuring this webinar you will: \n\nProvide delegates with clinical and digital tools needed to assess a patients risk of developing certain cancers based on their family history\nRecognise the pattern of presentation to primary care that could indicate a patient has a rare disease\nEquip attendees with the steps to follow when presented with results of patient-organised DNA genetic tests\n\nThe genetics of… series has been developed following feedback from delegates. Presented by the Medical Genetics section of the Royal Society of Medicine\, this series of talks will focus on the role of genetics in different areas of health and well-being.
URL:https://www.m4rd.org/event/the-genetics-of-primary-care/
LOCATION:ONLINE
CATEGORIES:Genetics,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/07/Screenshot-2021-07-05-at-14.11.58.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210806T133000
DTEND;TZID=Europe/London:20210806T153000
DTSTAMP:20260405T134323
CREATED:20210720T085833Z
LAST-MODIFIED:20210720T085833Z
UID:8289-1628256600-1628263800@www.m4rd.org
SUMMARY:Afternoon Tea with the Childhood Tumour Trust
DESCRIPTION:Want to learn more about Neurofibromatosis Type 1\, with a focus on diagnosis and care? \nCome along to Danesfield House at 1.30pm on Friday 6th August for Afternoon Tea with the Childhood Tumour Trust.  With Greg Smith MP and guest speakers. \nRSVP to vanessa@childhoodtumourtrust.org.uk
URL:https://www.m4rd.org/event/afternoon-tea-with-the-childhood-tumour-trust/
LOCATION:Danesfield House\, Henley Road\, Marlow\, Buckinghamshire\, SL7 2EY\, United Kingdom
CATEGORIES:Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/07/CTT-Danesfield-House-Invite-1-1-1.jpg
ORGANIZER;CN="Childhood Tumour Trust":MAILTO:info@childhoodtumourtrust.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210918
DTEND;VALUE=DATE:20210919
DTSTAMP:20260405T134323
CREATED:20210907T134250Z
LAST-MODIFIED:20210907T134250Z
UID:8375-1631923200-1632009599@www.m4rd.org
SUMMARY:Wolfram Syndrome UK and WellChild International Virtual Conference (Part 1)
DESCRIPTION:Register for your place on this international virtual conference hosted by Wolfram Syndrome UK and WellChild.\nThe 10th WS conference will again be held as virtual events over 2 Saturdays in September 2021. \nOn Saturday 18th September there will be 3 presentations from international speakers and on Saturday 25th September there will be a mix of speakers. \nBoth events are open to the Global WS community\, doctors\, researchers and others interested in Wolfram Syndrome or rare diseases. \nClick here to view the full programme and how to register for individual webinar presentations.
URL:https://www.m4rd.org/event/wolfram-syndrome-uk-and-wellchild-international-virtual-conference-part-1/
LOCATION:ONLINE
CATEGORIES:Conference,Rare Diseases,Research,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/09/NEW-WS-UK-Logo-Hi-Res-ISC.jpg
ORGANIZER;CN="Wolfram Syndrome UK":MAILTO:admin@wolframsyndrome.co.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20210923T120000
DTEND;TZID=Europe/London:20210923T130000
DTSTAMP:20260405T134323
CREATED:20210819T091343Z
LAST-MODIFIED:20210819T091438Z
UID:8336-1632398400-1632402000@www.m4rd.org
SUMMARY:Findings from the NCARDRS rare disease collection discovery phase
DESCRIPTION:This webinar is about the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) which is part of NDRS\n\n\n\n\n\nAs part of the National Disease Registration service (NDRS) webinar series\, this webinar will cover: \n\n\n\nNCARDRS supporting specialised services\nThe impact of COVID-19 amongst people with rare autoimmune rheumatic disease in England\nUnderstanding histiocytic disease – describing the largest population based cohort\n\nSpeakers: \nDr Mark Bishton\, Consultant Haematologist\, Nottingham University Hospitals NHS Trust\, Honorary Clinical Associate Professor\, University of Nottingham\, School of Medicine \nDr Peter Stilwell\, Higher Rare Disease and Cancer Analyst\, NDRS \nDr Hanhua Liu\, Senior Cancer Intelligence Analyst\, NDRS  \n  \nAlthough open to the public\, this webinar may be more useful for those working in healthcare\, commissioning\, public health\, policy or for a rare disease charity or patient group. \nThe webinar will be hosted on MS Teams and it will be recorded and uploaded to the NDRS website shortly after. There will be time for Q&A at the end of the talk. \nIf you have any questions about this webinar or registering to attend\, please contact NDRSengagement@phe.gov.uk.
URL:https://www.m4rd.org/event/findings-from-the-ncardrs-rare-disease-collection-discovery-phase/
LOCATION:ONLINE
CATEGORIES:Public health,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/08/rare-disease-2888820_1280.png
ORGANIZER;CN="National Disease Registration Service (NDRS)":MAILTO:NDRengagement@phe.gov.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210925
DTEND;VALUE=DATE:20210926
DTSTAMP:20260405T134323
CREATED:20210907T134709Z
LAST-MODIFIED:20210907T134709Z
UID:8378-1632528000-1632614399@www.m4rd.org
SUMMARY:Wolfram Syndrome UK and WellChild International Virtual Conference (Part 2)
DESCRIPTION:Register for your place on this international virtual conference hosted by Wolfram Syndrome UK and WellChild.\nThe 10th WS conference will again be held as virtual events over 2 Saturdays in September 2021. \nOn Saturday 18th September there will be 3 presentations from international speakers and on Saturday 25th September there will be a mix of speakers. \nBoth events are open to the Global WS community\, doctors\, researchers and others interested in Wolfram Syndrome or rare diseases. \nClick here to view the full programme and how to register for individual webinar presentations.
URL:https://www.m4rd.org/event/wolfram-syndrome-uk-and-wellchild-international-virtual-conference-part-2/
LOCATION:ONLINE
CATEGORIES:Conference,Rare Diseases,Research,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/09/DSCN1409-scaled.jpg
ORGANIZER;CN="Wolfram Syndrome UK":MAILTO:admin@wolframsyndrome.co.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20211007T080000
DTEND;TZID=Europe/London:20211007T170000
DTSTAMP:20260405T134323
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;VALUE=DATE:20211018
DTEND;VALUE=DATE:20211020
DTSTAMP:20260405T134323
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:20211020T140000
DTEND;TZID=Europe/London:20211020T163000
DTSTAMP:20260405T134323
CREATED:20210930T132522Z
LAST-MODIFIED:20210930T132522Z
UID:8462-1634738400-1634747400@www.m4rd.org
SUMMARY:Learning together: The importance of patient partnership
DESCRIPTION:Join the RSM to reflect on the principles of patient partnership and patient care in this afternoon prize meeting.  \nDr Bola Owolabi\, Director – Health Inequalities NHS England and NHS Improvement\,  will deliver the keynote lecture\, exploring the importance of patient partnership in the training of our future doctors. Medical students will have the opportunity to deliver a presentation on their reflections of the impact of the pandemic on themselves\, other healthcare professionals and patients.
URL:https://www.m4rd.org/event/learning-together-the-importance-of-patient-partnership/
LOCATION:ONLINE
CATEGORIES:Royal Society of Medicine,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/09/unnamed-17.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20211101T120000
DTEND;TZID=Europe/London:20211101T124500
DTSTAMP:20260405T134323
CREATED:20211006T131231Z
LAST-MODIFIED:20211006T131231Z
UID:8471-1635768000-1635770700@www.m4rd.org
SUMMARY:Rare disease education: insights on what clinicians know\, want and need
DESCRIPTION:SAVE THE DATE \nAn opportunity for clinicians and rare disease patient advocacy groups/advocates to come along to a lunchtime webinar with Medscape to hear about their large physician survey on rare diseases and best practices in rare disease education. \nDr Lucy McKay (CEO M4RD) and Dr Will Evans (Leeds and PRISM Group and Clinical Lead at Mendelian Health) will join Medscape’s Clinical Strategist S Christy Rohani-Montez and Director of Strategic Partnerships\, Jennifer Bomberger to discuss rare disease education and give insights on what clinicians know\, want and need!
URL:https://www.m4rd.org/event/rare-disease-education-insights-on-what-clinicians-know-want-and-need/
LOCATION:ONLINE
CATEGORIES:clinical,Lunch & learn,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/10/1633446900824.jpeg
ORGANIZER;CN="Medscape Education Global":MAILTO:aduncan@webmd.net
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20211111T180000
DTEND;TZID=Europe/London:20211111T194500
DTSTAMP:20260405T134323
CREATED:20211105T142052Z
LAST-MODIFIED:20211105T142121Z
UID:8551-1636653600-1636659900@www.m4rd.org
SUMMARY:Genomic ophthalmology: Diagnostics and therapeutics
DESCRIPTION:This webinar will provide insights and updates on ophthalmic genetics to ophthalmologists. Specialist speakers will educate delegates on how to order genetic testing\, how whole genome sequencing will improve patient care\, and will discuss the genetic therapies in development including limitations and new technology. \nCPD accredited. \nFree for RSM members.
URL:https://www.m4rd.org/event/genomic-ophthalmology-diagnostics-and-therapeutics/
LOCATION:ONLINE
CATEGORIES:Ophthalmology,Royal Society of Medicine,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/11/unnamed-18.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20211117
DTEND;VALUE=DATE:20211119
DTSTAMP:20260405T134323
CREATED:20210825T091828Z
LAST-MODIFIED:20210825T091828Z
UID:8345-1637107200-1637279999@www.m4rd.org
SUMMARY:Vasculitis: From cell to service
DESCRIPTION:This two-day free webinar is composed of a multi-professional faculty reflecting the multi-systemic nature of vasculitis\, comprehensive updates on key UKIVAS group activities\, and research and clinical updates in the field of vasculitis will be addressed. \nThis webinar is a collaboration between the Nephrology Section of the Royal Society of Medicine and UKIVAS.  \nAll specialities interested in the management of vasculitis are invited to attend in both paediatric and adult medicine.  \nThis webinar will:    \n\nDescribe UKIVAS registry activity with an outline of data linkage projects \nExamine recent service development\, quality improvement initiatives and multi-professional communication networks \nProvide updates on bioresource\, basic science and clinical research \nOutline advances in COVID-19 management and the impact of the pandemic on patients with vasculitis \nLearn of newer therapies\, steroid minimisation approaches and trial pathways across a broad range of the vasculitides \nHighlight advances in paediatric vasculitis and communication  \n\nCPD learning applied.
URL:https://www.m4rd.org/event/vasculitis-from-cell-to-service/
LOCATION:Webinar
CATEGORIES:clinical,Rare Diseases,Research,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/08/neq02-enews.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20211122T123000
DTEND;TZID=Europe/London:20211122T143000
DTSTAMP:20260405T134323
CREATED:20211104T085719Z
LAST-MODIFIED:20211104T085719Z
UID:8546-1637584200-1637591400@www.m4rd.org
SUMMARY:Understanding Health Inequalities Event
DESCRIPTION:Are you affected by a rare condition and from a diverse and marginalised community?\nIf so\, join Breaking Down Barriers for their virtual event\, to help them understand how health inequalities affect you. People diagnosed with a rare condition\, family members\, carers\, and charity representatives are all welcome to come along and offer support. BDB want the conversation to be as open\, accessible and as inclusive as possible. \nWhat will be discussed?\nHealth inequalities are unfair and avoidable differences in health between different groups of people. Breaking Down Barriers and the Department of Health and Social Care are working in partnership to understand more about the health inequalities experienced by people from diverse and marginalised communities who are also affected by a rare condition. We want to listen and learn about people’s lived experiences and identify ways that we can address health inequalities throughout new policies for people with rare conditions that are being developed now. \nHow to get involved\nIf you would like to join us\, please email Kerry.leeson@alstrom.org.uk or call 077161 35940. \nBDB will then send you joining instructions. BDB can also arrange a 1-1 chat before the event if that is helpful. Please let them know if there is anything they can do to support you to take part.
URL:https://www.m4rd.org/event/understanding-health-inequalities-event/
LOCATION:ONLINE
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/11/FDRaBAnXIAoOjmV.jpeg
ORGANIZER;CN="Breaking Down Barriers":MAILTO:kerry.leeson@alstrom.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20211124T120000
DTEND;TZID=Europe/London:20211124T164500
DTSTAMP:20260405T134323
CREATED:20211105T142429Z
LAST-MODIFIED:20211105T142429Z
UID:8556-1637755200-1637772300@www.m4rd.org
SUMMARY:Artificial intelligence in genomic medicine
DESCRIPTION:Join world-renowned experts as they lead exciting discussions exploring the intersection between Artificial Intelligence and Genomic Medicine. Experts leading the panel discussions include Chris Wigley\, CEO of Genomics England\, Professor Pearse Keane\, Professor of Artificial Intelligence Medicine at UCL\, Dr Stephen Kingsmore\, President and CEO of Rady Children’s Institute for Genomic Medicine\, and Professor Mihaela van der Schaar\,Professor of Machine Learning\, Artificial Intelligence and Medicine at the University of Cambridge. \nCPD accredited. \nFree for RSM members.
URL:https://www.m4rd.org/event/artificial-intelligence-in-genomic-medicine/
LOCATION:ONLINE
CATEGORIES:Genomics,Royal Society of Medicine,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/11/unnamed-19.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20211129T173000
DTEND;TZID=Europe/London:20211129T183000
DTSTAMP:20260405T134323
CREATED:20211105T142723Z
LAST-MODIFIED:20211105T142723Z
UID:8559-1638207000-1638210600@www.m4rd.org
SUMMARY:The genetics of consanguinity and inherited risk
DESCRIPTION:This webinar aims to explore the issues and management of risks related to endogamy and consanguinity and will highlight new advances in pre-natal screening protocols. Consanguineous marriage is still practiced by over 30% of the world’s population and in some areas\, the prevalence is as high as 60%. Advances in next-generation gene sequencing have led to a better understanding of pre-emptive carrier risk assessments and adult-onset disease risks. \nCPD accredited. \nFree for RSM members.
URL:https://www.m4rd.org/event/the-genetics-of-consanguinity-and-inherited-risk/
LOCATION:ONLINE
CATEGORIES:Genetics,Royal Society of Medicine,Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/11/unnamed-20.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20211130T190000
DTEND;TZID=Europe/London:20211130T203000
DTSTAMP:20260405T134323
CREATED:20211014T080745Z
LAST-MODIFIED:20211014T080851Z
UID:8488-1638298800-1638304200@www.m4rd.org
SUMMARY:Top tips for managing rare disease in GP
DESCRIPTION:The RCGP Northern Ireland Faculty is delighted to be collaborating with the Northern Ireland Rare Disease Partnership (NIRDP) to host a ‘Top Tips for Managing Rare Disease in GP’ evening. Topics provided aim to help you manage patients with rare disease.\nThe event is hosted by the RCGP Northern Ireland and some aspects may be NI focused\, but we welcome GPs from any nation to join if interested. \nSpeakers include: \n\nDr Caoimhe McKenna\, Clinical Genetic Registrar\nDr Genevieve Allum\, GP\nDr Lucy McKay\, CEO M4RD\nProf AJ McKnighht\, Queens University\, Belfast\n\nFor any queries or further information please contact Fiona Monaghan fiona.monaghan@rcgp.org.uk 
URL:https://www.m4rd.org/event/top-tips-for-managing-rare-disease-in-gp/
LOCATION:ONLINE
CATEGORIES:clinical,General Practice,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/10/FBfIgNeXoAQmPnI.jpeg
ORGANIZER;CN="Northern Ireland Rare Disease Partnership (NIRDP)":MAILTO:info@nirdp.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20211208T190000
DTEND;TZID=Europe/London:20211208T203000
DTSTAMP:20260405T134323
CREATED:20211109T091255Z
LAST-MODIFIED:20211202T100002Z
UID:8566-1638990000-1638995400@www.m4rd.org
SUMMARY:Diagnosis and Management of Rare Diseases
DESCRIPTION:This FREE live 90-minute webinar will focus on the diagnosis and management of rare diseases\, in particular haematological conditions.\nThe fundamentals of a rare disease – what is it? Who is affected? What’s impact and challenges when a condition is rare? What do rare conditions have in common? How can clinicians seek help\, advice and alleviate some of the burden of rarity. The webinar will focus on both generic issues relevant to patients and clinicians and also a detailed look at some example haematological conditions. The webinar will include practical examples and case based discussions. \nLearning Outcomes: \n\nAppreciate that rare conditions can impact patients in similar ways\nHow to approach potential rare diseases from a primary care viewpoint\nRelevance of rare diseases to your clinical practice\, how you might recognise them and when to ask for advice/refer\nSpecific haematological learning for example in sickle cell disease and haemophilia\nIdentify resources that can support you and your patient\n\nThere will be plenty of time in this webinar for Q&A. \nSpeakers will include: \nDr Lucy McKay\, CEO of Medics4RareDiseases\nDr William Evans\, Chairman NPUK\nMrs Karen Harrison\, Alex The Leukodystrophy Charity \n 
URL:https://www.m4rd.org/event/rare-blood-diseases/
LOCATION:ONLINE
CATEGORIES:Blood,clinical,RCGP,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/11/RCGP-event-1920-x-1080-px.png
ORGANIZER;CN="Royal College of General Practioners":MAILTO:info@rcgp.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20211214T110000
DTEND;TZID=Europe/London:20211214T123000
DTSTAMP:20260405T134323
CREATED:20211119T093833Z
LAST-MODIFIED:20211119T093833Z
UID:8625-1639479600-1639485000@www.m4rd.org
SUMMARY:Maximising engagement with healthcare professionals
DESCRIPTION:Join this webinar to explore the practical things patient groups can do to make sure they are engaging with HCPs in the most beneficial way.\nMost rare diseases are not concentrated in one area or country and do not affect one singular body system\, which makes finding healthcare professionals (HCPs) or specialists who understand them a real challenge for patients and patient organisations. Yet\, it is often a top strategic priority for patient organisations to find and engage with these professionals to drive faster diagnoses\, better understanding of and research into rare conditions. \nThis can be a real challenge when most HCPs have a very limited knowledge of rare conditions. HCPs often look straight to google for their research where they can be met with misinformation and do not always find the patient organisations that are the real experts straight away. Thus\, it falls onto the shoulders of these patient organisations to make themselves more visible and receptive to engagement with healthcare professionals. Whether at a basic operational level\, an organisational level\, through external collaborations or even by working with the organisations such as the NHS and NICE. \n\n\n\n\nThis webinar will:  \n\n\n\n\n\n\n\n\n\n\n\n\n\nExplore the different levels on which patient organisations can base their engagement with medical professionals\nCover the practical things patients can do (no matter what size or capacity) to engage efficiently and sustainably with HCPs\nHighlight case studies from across the rare space of what different patient groups are doing\n\nPlease note: This is the first in a series of two webinars which will explore engagement with HCPs. \n\n\n\n\n 
URL:https://www.m4rd.org/event/maximising-engagement-with-healthcare-professionals/
CATEGORIES:Patient advocacy,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/11/unnamed-13.png
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
END:VCALENDAR