BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Medics For Rare Disease - ECPv6.15.20//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:Medics For Rare Disease
X-ORIGINAL-URL:https://www.m4rd.org
X-WR-CALDESC:Events for Medics For Rare Disease
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:Europe/London
BEGIN:DAYLIGHT
TZOFFSETFROM:+0000
TZOFFSETTO:+0100
TZNAME:BST
DTSTART:20180325T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0100
TZOFFSETTO:+0000
TZNAME:GMT
DTSTART:20181028T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0000
TZOFFSETTO:+0100
TZNAME:BST
DTSTART:20190331T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0100
TZOFFSETTO:+0000
TZNAME:GMT
DTSTART:20191027T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0000
TZOFFSETTO:+0100
TZNAME:BST
DTSTART:20200329T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0100
TZOFFSETTO:+0000
TZNAME:GMT
DTSTART:20201025T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0000
TZOFFSETTO:+0100
TZNAME:BST
DTSTART:20210328T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0100
TZOFFSETTO:+0000
TZNAME:GMT
DTSTART:20211031T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0000
TZOFFSETTO:+0100
TZNAME:BST
DTSTART:20220327T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0100
TZOFFSETTO:+0000
TZNAME:GMT
DTSTART:20221030T010000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;VALUE=DATE:20211018
DTEND;VALUE=DATE:20211020
DTSTAMP:20260424T064101
CREATED:20210907T122346Z
LAST-MODIFIED:20210907T122346Z
UID:8371-1634515200-1634687999@www.m4rd.org
SUMMARY:NORD Breakthrough Summit
DESCRIPTION:NORD Rare Diseases and Orphan Products Breakthrough Summit is back on 18 & 19 October 2021 offering a two-day virtual programme.\nThe summit will discuss the latest updates on: \n\nrare disease diagnosis and research\ngenetics and genomics\ndrug development and patient engagement\nFDA oversight\n\nA limited number of free passes may be available to patient advocates\, students and patients.  Click here to apply.
URL:https://www.m4rd.org/event/nord-breakthrough-summit/
LOCATION:ONLINE
CATEGORIES:Conference,Genetics,Genomics,Networking,Rare Diseases,Research,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/09/Screenshot-2021-09-07-at-13.16.58.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20211007T080000
DTEND;TZID=Europe/London:20211007T170000
DTSTAMP:20260424T064101
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:20210925
DTEND;VALUE=DATE:20210926
DTSTAMP:20260424T064101
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:20210923T120000
DTEND;TZID=Europe/London:20210923T130000
DTSTAMP:20260424T064101
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:20210918
DTEND;VALUE=DATE:20210919
DTSTAMP:20260424T064101
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:20210806T133000
DTEND;TZID=Europe/London:20210806T153000
DTSTAMP:20260424T064101
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;TZID=Europe/London:20210726T173000
DTEND;TZID=Europe/London:20210726T183000
DTSTAMP:20260424T064101
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:20210630T093000
DTEND;TZID=Europe/London:20210630T153000
DTSTAMP:20260424T064101
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;VALUE=DATE:20210621
DTEND;VALUE=DATE:20210726
DTSTAMP:20260424T064101
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;VALUE=DATE:20210615
DTEND;VALUE=DATE:20210617
DTSTAMP:20260424T064102
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;TZID=Europe/London:20210610T150000
DTEND;TZID=Europe/London:20210610T210000
DTSTAMP:20260424T064102
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:20210513T170000
DTEND;TZID=Europe/London:20210513T180000
DTSTAMP:20260424T064102
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:20210510T130000
DTEND;TZID=Europe/London:20210510T140000
DTSTAMP:20260424T064102
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:20210421T110000
DTEND;TZID=Europe/London:20210421T123000
DTSTAMP:20260424T064102
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;TZID=Europe/London:20210322T171500
DTEND;TZID=Europe/London:20210322T180000
DTSTAMP:20260424T064102
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:20210304T180000
DTEND;TZID=Europe/London:20210304T193000
DTSTAMP:20260424T064102
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:20210224T180000
DTEND;TZID=Europe/London:20210224T200000
DTSTAMP:20260424T064102
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:20210223T120000
DTEND;TZID=Europe/London:20210223T130000
DTSTAMP:20260424T064102
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:20201214T173000
DTEND;TZID=Europe/London:20201214T173000
DTSTAMP:20260424T064102
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;VALUE=DATE:20201127
DTEND;VALUE=DATE:20201129
DTSTAMP:20260424T064102
CREATED:20200320T150136Z
LAST-MODIFIED:20200320T150302Z
UID:6597-1606435200-1606607999@www.m4rd.org
SUMMARY:RareFest20
DESCRIPTION:FREE to attend\, RAREfest20 is a full day Cambridge Rare Disease Network festival featuring interactive hands-on exhibits showcasing cool science\, visionary technology\, and pioneering organisations improving lives and bringing hope to those affected by rare diseases.  \nAlongside the exhibition there’ll be inspiring talks from experts and powerful patient voices\, rare disease inspired art and films.
URL:https://www.m4rd.org/event/rarefest20/
LOCATION:Guildhall Cambridge\, Cambridge\, United Kingdom
CATEGORIES:Conference,exhibition,Networking,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/03/https-cdn.evbuc_.com-images-91443871-147790335965-1-original.20200207-185545-e1584716365180.jpeg
ORGANIZER;CN="CRDN":MAILTO:jo@camraredisease.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20201117
DTEND;VALUE=DATE:20201120
DTSTAMP:20260424T064102
CREATED:20201022T084210Z
LAST-MODIFIED:20201022T084210Z
UID:7270-1605571200-1605830399@www.m4rd.org
SUMMARY:Virtual Rare Disease Showcase
DESCRIPTION:Findacure’s Rare Disease Showcase series is a celebration of rare disease projects around the UK\nFindacure’s Virtual Showcase is designed to be a unique event\, with interactive sessions taking place over a three-day period\, including conversations on telemedicine\, artificial intelligence\, patient group innovations\, and the impact of Covid-19 on rare diseases. Our online stage will include talks from across the rare disease spectrum\, supplemented by roundtable discussions\, networking sessions\, one-to-one video chats\, virtual exhibitions and more. \nWhether you wish to attend a single session\, or three days of fun\, secure your place now for free at The Virtual Rare Disease Showcase
URL:https://www.m4rd.org/event/virtual-rare-disease-showcase/
CATEGORIES:Conference,Rare Diseases,Showcase
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/10/https-cdn.evbuc_.com-images-110925457-176390699836-1-original.20200909-132835.jpeg
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20201111T110000
DTEND;TZID=Europe/London:20201112T120000
DTSTAMP:20260424T064102
CREATED:20201009T082949Z
LAST-MODIFIED:20201009T082949Z
UID:7210-1605092400-1605182400@www.m4rd.org
SUMMARY:Vasculitis: registries\, pathways and therapeutics
DESCRIPTION:This free 2 day webinar will provide a comprehensive update on all UKIVAS group activities and plans for the future\, along with recent clinical and research updates in vasculitis.\nThis is a multidisciplinary webinar where adult and paediatric vasculitis management will be examined. \nThe themes highlighted are relevant to; renal\, rheumatology\, respiratory\, ENT\, dermatology and all other disciplines involved in vasculitis management. \nThe RSM is proud to partner this webinar with UKIVAS\, a national rare diseases group co-chaired by Professor Mark Little and Dr Neil Basu. \nWebinar topics include: \n\nThe assessment and treatment of organ-specific manifestation in systemic vasculitis.\nUKIVAS registry activity update with an outline of recent national bioresource and genomic developments.\nNew therapies in complement\, new biologic combination approaches and trial pathways.\nService development\, quality improvement and communication networks.
URL:https://www.m4rd.org/event/vasculitis-registries-pathways-and-therapeutics/
CATEGORIES:Rare Diseases,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200622T123000
DTEND;TZID=Europe/London:20200622T133000
DTSTAMP:20260424T064102
CREATED:20200530T124325Z
LAST-MODIFIED:20200530T124959Z
UID:6798-1592829000-1592832600@www.m4rd.org
SUMMARY:COVID-19 and rare diseases: Risks and opportunities posed by the pandemic
DESCRIPTION:This unique webinar unites experts from primary care\, advocacy and medical genetics within the rare disease sector to discuss the impact of the virus on the rare disease community.\nParticipants will hear about the short and long-term impact of shielding\, consider how to best protect vulnerable populations in the future\, and reflect on the potential beneficial changes to services as a result of the pandemic – most acutely felt by people with complex diseases who depend on an intricate framework of support. \nSpeakers:\nMs Lindsay Weaver\, CEO of Metabolic Support UK \nDr Will Evans\, Clinical practice GP and academic GP\, University of Nottingham & Chair of NP-UK \nDr Elizabeth Forsythe\, Specialist Registrar in Clinical Genetics at Great Ormond Street Hospital
URL:https://www.m4rd.org/event/covid-19-and-rare-diseases-risks-and-opportunities-posed-by-the-pandemic/
LOCATION:Webinar
CATEGORIES:Rare Diseases,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200515
DTEND;VALUE=DATE:20200517
DTSTAMP:20260424T064102
CREATED:20200122T185220Z
LAST-MODIFIED:20200318T112441Z
UID:6255-1589500800-1589673599@www.m4rd.org
SUMMARY:The 10th European Conference on Rare Diseases & Orphan Products (ECRD)
DESCRIPTION:The European Conference on Rare Diseases & Orphan Products (ECRD) is recognised globally as the largest\, patient-led rare disease event in which collaborative dialogue\, learning and conversation takes place\, forming the groundwork to shape future rare disease policies.\nThe event draws together more than 800 participants from over 50 countries around the world. Leading\, inspiring and engaging all stakeholders to take action\, ECRD is where innovative solutions in the rare disease field are born. The Conference is an unrivalled opportunity to network and exchange invaluable knowledge with all stakeholders in the rare disease community  – patient representatives\, policy makers\, researchers\, clinicians\, industry representatives\, payers and regulators.
URL:https://www.m4rd.org/event/the-10th-european-conference-on-rare-diseases-orphan-products-ecrd/
LOCATION:ONLINE
CATEGORIES:Conference,Lectures,Networking,Rare Diseases,Showcase
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/01/ecrd2020-visuel-933x250.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200224T100000
DTEND;TZID=Europe/London:20200224T180000
DTSTAMP:20260424T064102
CREATED:20200121T180232Z
LAST-MODIFIED:20200121T180232Z
UID:6211-1582538400-1582567200@www.m4rd.org
SUMMARY:Drug Repurposing for Rare Diseases 2020 Conference
DESCRIPTION:Findacure’s Drug Repurposing for Rare Diseases Conference is returning for its seventh consecutive year!\nFindacure’s 7th annual conference will showcase excellence in the development of repurposed drugs for rare disease patients\, highlight the potential for patient group-led innovation\, and emphasise repurposing as a valid business model for orphan drug development in industry. Held in celebration of Rare Disease Day\, our event will unite the rare disease community to share in groundbreaking drug repurposing projects that can bring real change to those living with rare diseases.
URL:https://www.m4rd.org/event/drug-repurposing-for-rare-diseases-2020-conference/
LOCATION:America Square Conference Centre\, 17 America Square\, London\, EC3N 2LB\, United Kingdom
CATEGORIES:Conference,Networking,Patient Information Day,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2020/01/Picture1-e1579629397364.png
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200203T180000
DTEND;TZID=Europe/London:20200203T210000
DTSTAMP:20260424T064102
CREATED:20200121T174830Z
LAST-MODIFIED:20200121T175410Z
UID:6199-1580752800-1580763600@www.m4rd.org
SUMMARY:Rare disease spotlight: Aspergillosis
DESCRIPTION:In collaboration Barts & The London\, we will be shining the spotlight on Aspergillosis\nFran Pearson\, a patient who was diagnosed with Aspergillosis and Dr Darius Armstrong\, a consultant in Infectious Disease and Mycology will be hosting this event. \nYou will have the opportunity to learn more about the patient’s experience of being diagnosed with a rare infectious disease and the challenges faced by doctors when diagnosing patients with infectious diseases.
URL:https://www.m4rd.org/event/rare-disease-spotlight-aspergillosis/
LOCATION:Barts & The London School of Medicine – Garrod Building\, London\, E1 2\, United Kingdom
CATEGORIES:Lectures,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2020/01/78594149_1024621827885798_1782227981196853248_o-2-e1579628377278.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20191122T133000
DTEND;TZID=Europe/London:20191122T143000
DTSTAMP:20260424T064102
CREATED:20190922T123925Z
LAST-MODIFIED:20191008T153342Z
UID:5830-1574429400-1574433000@www.m4rd.org
SUMMARY:A Puff of Smoke Talk and Workshop w/ author and artist Sarah Lippett
DESCRIPTION:A Puff of Smoke (published by Jonathan Cape 7th November) is a graphic memoir about what it is like to grow up with an illness that no one can diagnose.\nSarah Lippett spent eleven years suffering with symptoms from an unknown condition\, until she was diagnosed with the rare disease Moyamoya at the age of 17. \nFor the month of November(1st – 29th November) an exhibition will be held at The Centre For Better Health that will explore the wider themes of the memoir. \nJoin Sarah as she talks through the process of revisiting her past and piecing it back together as a graphic memoir. The talk will be followed by a short workshop where participants are invited to create sequential narratives based on their own lived experiences. No drawing experience necesssary.  Book your place now.
URL:https://www.m4rd.org/event/a-puff-of-smoke-talk-and-workshop-w-author-and-artist-sarah-lippett/
LOCATION:The Centre for Better Health\, 1A Darnley Road\, London\, E9 6QH\, United Kingdom
CATEGORIES:Rare Diseases,workshop
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/09/A-Puff-of-Smoke-Cover-e1569156157319.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20191101T180000
DTEND;TZID=Europe/London:20191101T210000
DTSTAMP:20260424T064102
CREATED:20190922T122007Z
LAST-MODIFIED:20191008T153121Z
UID:5824-1572631200-1572642000@www.m4rd.org
SUMMARY:A Puff of Smoke Book Launch and Exhibition
DESCRIPTION:A Puff of Smoke is a graphic memoir about what it is like to grow up with an illness that no one can diagnose.\nSarah Lippett spent eleven years suffering with symptoms from an unknown condition\, until she was diagnosed with the rare disease Moyamoya at the age of 17. \nFor the month of November(1st – 29th November) an exhibition will be held at The Centre For Better Health that will explore the wider themes of the memoir. \nJoin Sarah to celebrate the launch of the A Puff of Smoke on the 1st of November 6-9pm at The Centre for Better Health in London. Copies of the book will be available for purchase. \nDrinks will be available and everyone is welcome! \nConfirm your attendance on Evenbrite for the chance to WIN a FREE signed copy of A Puff of Smoke.
URL:https://www.m4rd.org/event/a-puff-of-smoke-book-launch-and-exhibition/
LOCATION:The Centre for Better Health\, 1A Darnley Road\, London\, E9 6QH\, United Kingdom
CATEGORIES:book launch,exhibition,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/09/posterforweb-e1569156065729.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20191011T133000
DTEND;TZID=Europe/London:20191011T163000
DTSTAMP:20260424T064102
CREATED:20191002T130612Z
LAST-MODIFIED:20191002T130612Z
UID:5861-1570800600-1570811400@www.m4rd.org
SUMMARY:Rett UK Regional Professionals Day
DESCRIPTION:This is a fantastic opportunity to learn more about this rare and complex disorder in an informal session where you have lots of opportunities to ask questions.\nWith over 30 years’ experience\, Rett UK is the only UK charity providing professional family support services and training for anyone involved in supporting someone with Rett syndrome. \nAimed at SLTs\, OTs\, GPs and carers\, this is a free event where the Rett UK team get the opportunity to educate you on this rare neurological disorder\, to answer questions and to inform you of other future events they will be holding.
URL:https://www.m4rd.org/event/rett-uk-regional-professionals-day/
LOCATION:THE HUB\, Easton Street\, High Wycombe\, Buckinghamshire\, HP11 1NJ\, United Kingdom
CATEGORIES:Networking,Patient Information Day,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/10/RETT-UK-LOGO.jpg
ORGANIZER;CN="Rett UK":MAILTO:keren.decoito@rettuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20191003T090000
DTEND;TZID=Europe/London:20191004T133000
DTSTAMP:20260424T064102
CREATED:20190822T091840Z
LAST-MODIFIED:20190822T091954Z
UID:5756-1570093200-1570195800@www.m4rd.org
SUMMARY:Pompe Preceptorship
DESCRIPTION:Pompe Preceptorship\, hosted by Mark Holland from the Metabolic Unit\, Manchester\nTopics to be included: \n\nBiochemistry & Genetics of Pompe Disease\nInfantile & Adult Pompe Disease\nMetabolic Myopathy\nBenefits of exercise in Pompe Disease\nNutrition in Pompe Disease\nRespiratory function\nPalliative care\nResearch in Pompe\nFuture of Gene Therapy\nAGSD – Patient Society\nPatient’s Experience of living with the condition\n\nThis event is open to all medical staff but places are limited.  Funding for this event is available. \nFor further information and to request a registration form please contact:\nKaren Wynne\, Mark Holland Metabolic Unit\, Email: karen.wynne@srft.nhs.uk \nTelephone: 0161 206 4365
URL:https://www.m4rd.org/event/pompe-preceptorship/
LOCATION:Mercure Hotel Manchester\, Manchester Piccadilly\, Manchester\, M139WU\, United Kingdom
CATEGORIES:Conference,Lectures,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/05/dna-1811955_1920-1-e1566465568611.jpg
ORGANIZER;CN="Salford Royal NHS Foundation Trust":MAILTO:Keeley.Crompton@srft.nhs.uk
END:VEVENT
END:VCALENDAR