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DTSTART;TZID=Europe/London:20220215T180000
DTEND;TZID=Europe/London:20220215T203000
DTSTAMP:20260403T224813
CREATED:20211006T143455Z
LAST-MODIFIED:20211006T143455Z
UID:8480-1644948000-1644957000@www.m4rd.org
SUMMARY:Lessons learned from the COVID-19 pandemic: Clinical trials and drug development in rare disease
DESCRIPTION:This episode refers to theme 3 in the Making The Unseen Seen: Rare disease and lessons learned from the pandemic report and will discuss how safety considerations\, travel restrictions\, shielding\, trial-sites being repurposed to COVID-19 wards\, research staff either being called to the front- line or called to replace others who were\, have compounded the already fragile world of clinical development for rare diseases.\nRead Making The Unseen Seen: Rare disease and lessons learned from the pandemic report to find out more on this episode\, the series\, and the ARDEnt Team’s research. \nCPD learning applied. \nThis webinar is part of the ‘Lessons learned from the COVID-19 pandemic’ series\, a series that will cover all themes outlined in the Making The Unseen Seen report\, from diagnostic delay in episode 1 to health and social care in episode 2\, clinical trials and drug development in episode 3\, and concluding with the UK Rare Diseases Framework and action plans in episode 4. \nThis webinar is available for on-demand viewing. The webinar recording will be available for registered delegates up to 30 days after the live webinar broadcast via Zoom. The link will be sent 24 hours after the webinar takes place.
URL:https://www.m4rd.org/event/lessons-learned-from-the-covid-19-pandemic-clinical-trials-and-drug-development-in-rare-disease/
LOCATION:ONLINE
CATEGORIES:COVID-19,Rare Diseases,Royal Society of Medicine,Webinar
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220222T180000
DTEND;TZID=Europe/London:20220222T203000
DTSTAMP:20260403T224813
CREATED:20211006T143422Z
LAST-MODIFIED:20211006T143422Z
UID:8482-1645552800-1645561800@www.m4rd.org
SUMMARY:Lessons learned from the COVID-19 pandemic: Looking to the future with The UK Rare Diseases Framework
DESCRIPTION:Jointly organised with ARDEnt\, this webinar will discuss the recommendations the ARDEnt team is using to help inform how the UK is going to deliver its objectives set out in the UK Rare Diseases Framework\, published in January 2021.\nThe webinar panel includes members of ARDEnt and those responsible for overseeing the impact of the Framework in the UK.\nRead about these recommendations in the Making The Unseen Seen: Rare disease and lessons learned from the pandemic report to find out more on this episode\, the series\, and the ARDEnt Team’s research. \nCPD learning applied. \nThis webinar is part of the ‘Lessons learned from the COVID-19 pandemic’ series\, a series that will cover all themes outlined in the Making The Unseen Seen report\, from diagnostic delay in episode 1 to health and social care in episode 2\, clinical trials and drug development in episode 3\, and concluding with the UK Rare Diseases Framework and action plans in episode 4. \nThis webinar is available for on-demand viewing. The webinar recording will be available for registered delegates up to 30 days after the live webinar broadcast via Zoom. The link will be sent 24 hours after the webinar takes place. 
URL:https://www.m4rd.org/event/lessons-learned-from-the-covid-19-pandemic-looking-to-the-future-with-the-uk-rare-diseases-framework/
LOCATION:ONLINE
CATEGORIES:COVID-19,Rare Diseases,Royal Society of Medicine,Webinar
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220228T183000
DTEND;TZID=Europe/London:20220228T200000
DTSTAMP:20260403T224813
CREATED:20220201T112556Z
LAST-MODIFIED:20220201T112556Z
UID:9074-1646073000-1646078400@www.m4rd.org
SUMMARY:Beyond the Student Voice Prize: Continuing your involvement in rare disease
DESCRIPTION:Learn how you can further your interest and get more involved in the world of rare diseases to benefit both yourself and the rare community\n\n\n\n\n\n\n\nThe Student Voice Prize is delighted to invite you to our virtual rare disease day event ‘Beyond the Student Voice Prize;’ an opportunity to connect with peers and patient group leaders to learn more about the rare community and how you can get further involved.  \nThe event will be an informal opportunity for you to meet new people and share your experiences of the rare disease community and entering the Student Voice Prize. You’ll also learn how you can build on your current knowledge to drive your personal and professional development whilst helping those in the rare disease community. \nWho is this event for?  \n\nPrevious entrants of the Student Voice Prize\nMedical students interested in learning more about rare conditions and getting involved in the community\nRare disease patient group leaders who have been involved in the Student Voice Prize in the past\nRare Disease patient group leaders who haven’t been involved in the Student Voice Prize in the past- all are welcome!\n\nWhy should you attend?  \n\nRare diseases are collectively common\, meaning you are likely to come across them in one form or other in your medical career. Learning about them early can better prepare you as a future clinician and can ensure better outcomes for individuals diagnosed and living with rare conditions.\nRare diseases are gaining increasing momentum as pressing health priorities worldwide\, compounded by advances such as the first-ever UN Resolution on persons with rare diseases and the new UK Rare Diseases Framework. There has never been a better time to get involved with the rare disease community to help create change\, raise awareness and drive your own personal development.\n\nThe Student Voice Prize is much more than just a competition. It has proven itself to be a gateway for many medical students\, nurses and scientists who want to engage with patients from across the medical spectrum\, particularly in rare disease. This is your chance to go beyond and become an advocate for a large\, but poorly represented community and help make a real difference in the lives of rare disease patients and their families.
URL:https://www.m4rd.org/event/beyond-the-student-voice-prize-continuing-your-involvement-in-rare-disease/
LOCATION:ONLINE
CATEGORIES:Networking,Rare Diseases,Student Voice Prize,Webinar
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220504
DTEND;VALUE=DATE:20220505
DTSTAMP:20260403T224813
CREATED:20220408T083425Z
LAST-MODIFIED:20220408T083425Z
UID:9272-1651622400-1651708799@www.m4rd.org
SUMMARY:Genomics England Research Summit 2022
DESCRIPTION:The Summit is an exciting one-day event that explores the latest research and technology innovations from Genomics England\, partners and complementary fields.\nThrough talks\, panel discussions\, posters and exhibitions across four themes\, you can take part in a valuable programme tailored to your areas of interest. Make connections\, learn new skills and help to shape the next steps in strengthening the ecosystem that’s turning science into healthcare for everyone. \nThe Summit is both virtual and in-person\, held at the Business Design Centre in Islington\, London\, easily accessed from King’s Cross and St Pancras International stations.
URL:https://www.m4rd.org/event/genomics-england-research-summit-2022/
LOCATION:Business Design Centre\, 52 Upper Street\, London\, N1 0QH\, United Kingdom
CATEGORIES:Conference,Genomics,Networking,Research
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220504T181500
DTEND;TZID=Europe/London:20220504T201500
DTSTAMP:20260403T224813
CREATED:20220406T082707Z
LAST-MODIFIED:20220406T082707Z
UID:9253-1651688100-1651695300@www.m4rd.org
SUMMARY:Alumni Angles: In conversation with Professor Sir Andrew Pollard
DESCRIPTION:Join QMUL for a special in conversation event with vaccine expert and alumnus Professor Sir Andrew Pollard (Medicine MBBS\, 1989)\, who leads the team behind the Oxford-AstraZeneca vaccine for COVID-19. \nYou will also hear from the Principal\, Professor Colin Bailey CBE\, Professor Sir Mark Caulfield\, Vice-Principal (Health)\, and our chair\, Dr Vanessa Apea\, Consultant Physician in Sexual Health and HIV Medicine at Barts Health NHS Trust. \nThis event will be held in the Perrin Lecture Theatre\, Whitechapel campus and will be live-streamed to an online audience.
URL:https://www.m4rd.org/event/alumni-angles-in-conversation-with-professor-sir-andrew-pollard/
LOCATION:Queen Mary University of London\, Perrin Lecture Theatre\, Blizard Building\, Faculty of Medicine & Dentistry\, 4 Newark Street\, London\, E1 2AT\, United Kingdom
CATEGORIES:COVID-19,Lectures
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2022/04/Professor-Andrew-Pollard-1.jpg
ORGANIZER;CN="Queen Mary Alumni Engagement Team":MAILTO:s.gazi@qmul.ac.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220509T193000
DTEND;TZID=Europe/London:20220509T213000
DTSTAMP:20260403T224813
CREATED:20220407T133529Z
LAST-MODIFIED:20220407T133529Z
UID:9261-1652124600-1652131800@www.m4rd.org
SUMMARY:Not All Genes are Equal (Pint of Science)
DESCRIPTION:Every person has two copies of each gene\, one inherited from each parent. Most genes are the same in all people\, but a small number of them are slightly different. These tiny differences contribute to each person’s unique physical features.\nLet’s explore rare imprinted genes\, a special class where one parental copy is switched off\,  and the life long impact that can have\, and consider what happens when your genes make you slightly more hungry all of the time. \n  \nIs obesity a choice? Led by Dr Giles Yeo\nIt is clear that the cause of obesity is a result of eating more than you burn. It is physics. What is more complex to answer is why some people eat more than others? Differences in our genetic make-up mean some of us are slightly more hungry all the time and so eat more than others. In contrast to the prevailing view\, obesity is not a choice. People with obesity are not bad or lazy; rather\, they are fighting their biology. \nA genetic battle of the sexes and rare imprinting disorders.  Led by Dr Miguel Constância\nImprinted genes are a special class of genes because one of the two parental copies is silenced by epigenetic mechanisms during development. These genes have key roles in how we acquire resources in the womb and throughout life.\nUnlike genetic changes\, epigenetic changes are reversible and do not change your DNA sequence\, but they can change how your body reads a DNA sequence.\nIn this talk we’ll explore what happens when the only active copy of imprinted genes is deleted\, mutated or silenced due to epigenetics and what happens if the silent copy of imprinted genes becomes activated.
URL:https://www.m4rd.org/event/not-all-genes-are-equal-pint-of-science/
LOCATION:Espresso Library\, 210 East Road\, Cambridge\, Cambridgeshire\, CB1 1BG\, United Kingdom
CATEGORIES:Festival
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2022/04/1649058865449.jpeg
ORGANIZER;CN="CRDN":MAILTO:jo@camraredisease.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220510T193000
DTEND;TZID=Europe/London:20220510T213000
DTSTAMP:20260403T224813
CREATED:20220407T134132Z
LAST-MODIFIED:20220407T134132Z
UID:9265-1652211000-1652218200@www.m4rd.org
SUMMARY:Curing with Kindness: Rare Childhood Brain Tumours (Pint of Science)
DESCRIPTION:Researchers developing new treatments for children with rare brain tumours know that it’s not a case of treating children like tiny adults and that surviving the disease isn’t enough.\nReducing the damage done by treatments is just as important to the survivor. Discover how researchers are minimising damage and why they think studying rare children’s tumours is vital to our wider understanding. \n  \nAre rare tumours worth studying? with Sigourney Bell\nWhy is it important that we study paediatric tumours and how are they different to adult cancers? What does the future look like for rare paediatric brain tumours and how can we work towards a better future for these children? \nCuring with Kindness – New therapies for curable rare brain tumours with Dr Jessica Taylor\nI work at CRUK Cambridge Institute finding new therapies for children with a rare\, yet curable brain tumour. However\, a cure isn’t enough for these children. After surgery\, radiation and aggressive chemotherapy mean that they suffer from a multitude of different side-effects\, both short-term and long lasting. We aim to find cures that focus not only on surviving cancer\, but on the survivor.
URL:https://www.m4rd.org/event/curing-with-kindness-rare-childhood-brain-tumours-pint-of-science/
LOCATION:Espresso Library\, 210 East Road\, Cambridge\, Cambridgeshire\, CB1 1BG\, United Kingdom
CATEGORIES:Festival
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ORGANIZER;CN="CRDN":MAILTO:jo@camraredisease.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220517
DTEND;VALUE=DATE:20220520
DTSTAMP:20260403T224813
CREATED:20220408T090704Z
LAST-MODIFIED:20220408T090704Z
UID:9276-1652745600-1653004799@www.m4rd.org
SUMMARY:Online workshop: Understanding access and reimbursement
DESCRIPTION:Getting wider access to drugs for as many patients a possible is a clear priority in the drug development process\, especially for patient groups who are working to secure research into and treatments for their rare conditions.\nHowever\, understanding how to secure access to newly developed treatments is an often-neglected challenge. The processes involved in securing reimbursement can be intimidating to patient groups and act as a real barrier to engagement.  \nThis workshop will outline the basics of access and reimbursement: what it means\, when it happens\, and who is involved. It will also explore the key ways in which patient groups can contribute to the process and what should they be prepared for. Attendees will leave feeling more confident in what the access and reimbursement process involves and where they can add value. \nDay one: Access and reimbursement 101\, back to basics\nDay two: Understanding the NICE appraisal process\nDay three: where can patient groups get involved?
URL:https://www.m4rd.org/event/online-workshop-understanding-access-and-reimbursement/
LOCATION:ONLINE
CATEGORIES:Patient Information Day,Rare Diseases,Webinar
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220608T140000
DTEND;TZID=Europe/London:20220608T153000
DTSTAMP:20260403T224813
CREATED:20220524T133648Z
LAST-MODIFIED:20220524T133648Z
UID:9518-1654696800-1654702200@www.m4rd.org
SUMMARY:Understanding Rare Disease: Communicating with Patients
DESCRIPTION:Sign up to learn about the role of communication in rare disease from those affected directly\, in an interactive FREE virtual event!\nAbout this event\nThe event will kick off with a session from our guest speaker\, who will explore the value of effective and sensitive communication skills when it comes to handling complex conditions\, such as rare disease. Attendees will then have the chance to speak directly with some of the I am Number 17 campaign changemakers and hear first-hand about how their diagnostic odysseys came to an end\, through perseverance and working together with the help of their HCP/Consultants. \nWhat will you get from attending this event?\n• Gain experience from communicating directly with those affected by rare disease \n• Improve your understanding of rare disease and how to react when faced with a potential rare disease \n• Develop your communication skills (notability how to share sensitive information and break bad news) \n• Gain a certificate of attendance to exhibit your enhanced learning \nWe hope that learning from real-life examples will provide you with tangible learnings to take along your medical careers and ultimately equip you to Find the 1 in 17 in the future… \nAll medical students are welcome to attend the event! \nPlease note this event may be beneficial for students preparing for upcoming OSCE examinations. \nWe look forward to seeing you there and learning together! \nThis event is initiated and funded by Takeda UK\, run together with Medics4RareDisease.
URL:https://www.m4rd.org/event/understanding-rare-disease-communicating-with-patients/
CATEGORIES:Medical Students,Rare Diseases,Webinar,workshop
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220613T173000
DTEND;TZID=Europe/London:20220613T183000
DTSTAMP:20260403T224813
CREATED:20220504T084323Z
LAST-MODIFIED:20220504T084323Z
UID:9302-1655141400-1655145000@www.m4rd.org
SUMMARY:The genetics of intellectual disability: Episode 15
DESCRIPTION:This webinar is part of the popular Genetics of webinar series and will provide an interesting update on the genetic origins of intellectual disability\, as well as explore what challenges remain in this area. \nOur speakers will explore what research is required after a genetic diagnosis of intellectual disability and what families would value the most from the diagnostic experience. This webinar is also a special chance to discuss what the experience of receiving a genetic diagnosis is like for patients and their families. \nDuring this webinar you will: \n\nUnderstand what we do know about the genetic origin of intellectual disabilities\nAppreciate the challenges and opportunities in research in this field\nRecognise how post-diagnostic research is important in order to understand the different ways people experience intellectual disability\nValue the insights gained from those who have received a genetic diagnosis of intellectual disability \n\nThis meeting is in association with the RSM Intellectual Disability Section. \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 wellbeing.
URL:https://www.m4rd.org/event/the-genetics-of-intellectual-disability-episode-15/
LOCATION:LIVE STREAM
CATEGORIES:Genetics,Rare Diseases,Royal Society of Medicine,Webinar
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220617
DTEND;VALUE=DATE:20220618
DTSTAMP:20260403T224813
CREATED:20220406T083528Z
LAST-MODIFIED:20220406T083528Z
UID:9258-1655424000-1655510399@www.m4rd.org
SUMMARY:Hypermobility syndrome: A practical guide to assessment\, management and care
DESCRIPTION:Join the RSM at this multidisciplinary event which will provide a valuable overview and a broader understanding of hypermobility syndrome and the care of these patients. \nExperts in their field will present a series of talks that will inform delegates about practical guides for the assessment and management of this condition and will explore how community care can make a difference. \nKey speakers include: Professor Lara Bloom\, Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration\, Penn State College of Medicine and CEO of The Ehlers-Danlos Society\, Dr James Kustow\, Consultant Psychiatrist and Medical Director\, The Groves\, Dr Jane Simmonds\, Co-deputy Director of Education and MSc Advanced Paediatric Physiotherapist\, and many more. \n  \nBook in-person event here \nBook live stream here
URL:https://www.m4rd.org/event/hypermobility-syndrome-a-practical-guide-to-assessment-management-and-care/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:Rare Diseases,Royal Society of Medicine
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220627
DTEND;VALUE=DATE:20220702
DTSTAMP:20260403T224813
CREATED:20220315T114405Z
LAST-MODIFIED:20220315T114405Z
UID:9161-1656288000-1656719999@www.m4rd.org
SUMMARY:11th European Conference on Rare Disease & 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 goal-driven rare disease policies and allow for important and innovative discussions on a national and an international level to take place. \nECRD 2022 will take place online on 27 June -1 July. \nLeading\, inspiring and engaging all stakeholders to take action\, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with over 1500 stakeholders in the rare disease community – patient advocates\, policy makers\, researchers\, clinicians\, healthcare professionals\, healthcare industry representatives\, academics\, payers\, regulators and Member State representatives. \nThis 11th edition follows a pivotal two-year Rare 2030 Foresight Study\, supported by the European Parliament and European Commission\, that guided a large-scale and multi-stakeholder reflection on rare disease policy in Europe through 2030. \nThe concluding recommendation of Rare2030 was the need for a new European policy framework on rare diseases with measurable and actionable goals. Current actions at Member State level alone\, or legislative changes in specific areas are not enough. We need a new European collective strategy for rare diseases to bring Member States’ commitment to rare diseases under a common umbrella and mark a step forward in the post-COVID world. \nThis ECRD will be a critical opportunity for all stakeholders to consider how to transform this exhaustive review of the strategy on rare diseases into a proposal of concrete actions ultimately creating the ecosystem required to address the unmet needs and persisting inequalities across Europe.
URL:https://www.m4rd.org/event/11th-european-conference-on-rare-disease-orphan-products-ecrd/
LOCATION:ONLINE
CATEGORIES:Conference,Lectures,Networking,Rare Diseases
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220707T173000
DTEND;TZID=Europe/London:20220707T183000
DTSTAMP:20260403T224813
CREATED:20220428T122714Z
LAST-MODIFIED:20220428T122714Z
UID:9298-1657215000-1657218600@www.m4rd.org
SUMMARY:Facing up to the genomic gap: Tackling equality and diversity in genomics on
DESCRIPTION:This webinar is part of the popular Genetics of webinar series and will discuss the challenge of equality and diversity in genomic research and clinical settings and strategies to address this. \nGenomic research has traditionally been focused on caucasian populations\, which leads to inherent biases in genomic findings translated into clinical research. Underrepresentation of other populations in genomic datasets and biobanking endeavours leads to genomic medicine services being underutilized and inaccessible to these communities. \nDuring this webinar you will: \n\nUnderstand that genomic data is under-representative of many minority populations which has a direct impact on genomic research\nDevelop an idea of how the scientific community is trying to address this issue\nAppreciate the challenges of ensuring that diverse communities are able to access the genomic medicine service\nDescribe strategies that are being undertaken to try and improve genomic testing provision within diverse communities
URL:https://www.m4rd.org/event/facing-up-to-the-genomic-gap-tackling-equality-and-diversity-in-genomics-on/
LOCATION:LIVE STREAM
CATEGORIES:Genomics,Royal Society of Medicine,Webinar
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220714
DTEND;VALUE=DATE:20220715
DTSTAMP:20260403T224813
CREATED:20220630T103933Z
LAST-MODIFIED:20220630T103933Z
UID:9705-1657756800-1657843199@www.m4rd.org
SUMMARY:Showcase of Genomics across North Thames
DESCRIPTION:Join the North Thames Genomic Medicine Service showcase to find out how genomic medicine is transforming healthcare in their region. \nGenomic medicine is coming into every-day-practice for multi-disciplinary healthcare professionals across the NHS\, improving how we diagnose and treat patients of all ages with cancer and rare or inherited diseases.\nIn North London\, Essex and Hertfordshire\, the North Thames Genomic Medicine Service is delivering new genomic tests and redesigning pathways with clinical services to bring the benefits of genomics to patients across the region. \nIn this one day showcase you can find out how genomic medicine is changing healthcare in the region\, and hear about the new pathways now in place across many services.
URL:https://www.m4rd.org/event/showcase-of-genomics-across-north-thames/
LOCATION:UCL\, Gower Street\, London\, WC1E 6XA\, United Kingdom
CATEGORIES:Genomics,Lectures
ATTACH;FMTTYPE=image/webp:https://www.m4rd.org/wp-content/uploads/2022/06/https-cdn.evbuc_.com-images-286166509-349767685317-1-original.20220517-130451.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220909
DTEND;VALUE=DATE:20220912
DTSTAMP:20260403T224813
CREATED:20220624T103702Z
LAST-MODIFIED:20220624T103702Z
UID:9694-1662681600-1662940799@www.m4rd.org
SUMMARY:BBS UK Annual Conference 2022
DESCRIPTION:This highly-anticipated event provides the unique opportunity to learn about the latest research\, treatments\, and day to day management of BBS\, network with like-minded professionals and more importantly\, learn from those living with Bardet-Biedl syndrome. \nThe programme is still being finalised but will include:\n* Invaluable personal perspectives of living with BBS\n* An Update on Research and Understanding of BBS from Professor Phil Beales\n* The BBS Registry: Dr Elizabeth Forsythe\n* An update on behavioural research and health and wellbeing research in BBS from Dr Emma McGibbon and Dr Jane Waite\n* Guide Dogs UK: Overview of services \nIt is hoped to have the event CPD accredited and the cost is just £40 for professionals\, which includes refreshments and a luxury buffet lunch. \nFor more information please go to https://bbsuk.org.uk/news-events/bbs-uk-conference/ \nThe professionals booking form can be found here
URL:https://www.m4rd.org/event/bbs-uk-annual-conference-2022/
LOCATION:Hilton Hotel\, Northampton\, 100 Watering Lane\, Collingtree\, NN4 0XW\, United Kingdom
CATEGORIES:Family Day,General Practice,Patient Information Day,Rare Diseases
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221010
DTEND;VALUE=DATE:20221011
DTSTAMP:20260403T224813
CREATED:20220812T121726Z
LAST-MODIFIED:20220812T121726Z
UID:9815-1665360000-1665446399@www.m4rd.org
SUMMARY:Drug Repurposing for Rare Diseases 2022
DESCRIPTION:We are delighted to announce Beacon’s ninth annual Drug Repurposing for Rare Diseases Conference and\, for the first time since 2020\, it’s returning live and in-person! \nThis annual conference\, Drug Repurposing for Rare Diseases\, highlights the role that drug repurposing can play in lowering the cost and accelerating the development of rare disease treatments. \nAn event unique in its collaborative and multi-stakeholder focus\, we bring patient groups\, researchers and industry professionals together to showcase excellent examples of rare repurposing. \nDrug Repurposing for Rare Diseases sparks cross-sector conversation\, uniting the expertise of diverse groups to inspire meaningful\, patient-centred drug repurposing research for rare diseases. \nClick here for more details
URL:https://www.m4rd.org/event/drug-repurposing-for-rare-diseases-2022/
LOCATION:America Square Conference Centre\, 17 America Square\, London\, EC3N 2LB\, United Kingdom
CATEGORIES:Conference,Drug repurposing,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2022/08/Maisha.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221011
DTEND;VALUE=DATE:20221012
DTSTAMP:20260403T224813
CREATED:20220916T112542Z
LAST-MODIFIED:20220916T112542Z
UID:9970-1665446400-1665532799@www.m4rd.org
SUMMARY:Innovation Bootcamp in Rare Diseases 2022
DESCRIPTION:The third edition of the Innovation Bootcamp in Rare Diseases (IBRD2022) congress in Brussel will be held on October 11th 2022. \nThe target audience of this event includes all professionals involved in the prevention\, treatment and diagnosis of rare diseases and orphan drug research and development\, including researchers\, clinicians\, pharma\, policy makers and patient representatives. \nFor more information email Marc Dooms.
URL:https://www.m4rd.org/event/innovation-bootcamp-in-rare-diseases-2022/
LOCATION:Maison de la Poste\, Rue Picard 5/7\, Brussels\, 1000\, Belgium
CATEGORIES:Conference,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2022/09/Screenshot-2022-09-16-at-12.24.58.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20221020T180000
DTEND;TZID=Europe/London:20221020T193000
DTSTAMP:20260403T224813
CREATED:20220930T083524Z
LAST-MODIFIED:20220930T083524Z
UID:10112-1666288800-1666294200@www.m4rd.org
SUMMARY:Young People’s Genomics Café
DESCRIPTION:Are you a young person interested in finding out more about genomics and health\, or affected by a rare or genetic condition? \nChromosomes!\nDr Andrew Fry\, Clinical Senior Lecturer in Medical Genetics\, Cardiff University \nAn Introduction to Pharmacogenomics\nSophie Harding\, Pharmacogenomics Lead\, Royal Pharmaceutical Society of GB \nMedics4Rare Diseases\nLucy McKay\, CEO Medics4RareDiseases \nEveryone is welcome to this FREE online event. \nRegister for Virtual Café: https://tinyurl.com/34ehzs74
URL:https://www.m4rd.org/event/young-peoples-genomics-cafe/
LOCATION:LIVE STREAM
CATEGORIES:Child and Young Person,Genetics,Genomics,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/webp:https://www.m4rd.org/wp-content/uploads/2022/09/https-cdn.evbuc_.com-images-353431989-221628550545-1-original.20220913-144210.webp
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20221021T090000
DTEND;TZID=Europe/London:20221021T130000
DTSTAMP:20260403T224813
CREATED:20220928T100847Z
LAST-MODIFIED:20220928T101534Z
UID:10084-1666342800-1666357200@www.m4rd.org
SUMMARY:Hypermobility spectrum disorders(HSD) and Hypermobile Ehlers-Danlos syndrome (hED)
DESCRIPTION:Training for Health Professionals on hypermobility spectrum disorders(HSD) and Hypermobile Ehlers-Danlos syndrome (hEDS) \nThe online course includes presentations and interactive case-based sessions for Health Professionals and those who wish to gain further knowledge and advance their clinical practice in assessing and management children and adults with Hypermobility Spectrum Disorders\, Hypermobile Ehlers Danlos Syndromes and associated conditions.
URL:https://www.m4rd.org/event/training-for-health-professionals-hsd-heds/
LOCATION:LIVE STREAM
CATEGORIES:HCPs,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2022/09/TRAINI1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20221029T130000
DTEND;TZID=Europe/London:20221029T160000
DTSTAMP:20260403T224813
CREATED:20221004T085820Z
LAST-MODIFIED:20221004T085820Z
UID:10125-1667048400-1667059200@www.m4rd.org
SUMMARY:Patient partnerships: Improving healthcare equality from pandemic to endemic
DESCRIPTION:The purpose of this event is to promote partnerships between patients and the medical profession to pave the way for a better\, more inclusive healthcare system as we rebuild after the pandemic. By strengthening this relationship\, we aim to ensure patients never feel isolated when they are at their most vulnerable. We will discuss real-life examples of partnerships and their successes.\nThere will be a series of presentations and workshops by students and experienced professionals on non-technical aspects of medical practice\, such as political challenges with the public health service and humanitarian values. The event will end with a prize-giving ceremony for the Dr Edwin Doubleday essay award\, which funds medical students aspiring to improve the relationship between patients and the medical profession. \nAims of the event: \n\nTo highlight the role and importance of patient partnerships\nTo educate the medics of tomorrow about non-technical aspects of practice\nTo inspire attendees to improve the relationship between patients and the medical profession\nTo give attendees the chance to improve their presentation and networking skills\n\nThis event is run in association with the University of Manchester Doubleday Centre and the Doubleday Medical Schools Patient Partnership Collaboration. \nStudents are invited to submit an essay using this link below to enter the Doubleday Student Prize.
URL:https://www.m4rd.org/event/patient-partnerships-improving-healthcare-equality-from-pandemic-to-endemic/
LOCATION:LIVE STREAM
CATEGORIES:Medical Students,Patient advocacy,Royal Society of Medicine,workshop
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2022/10/GROUP_ON_DOT.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20221118T090000
DTEND;TZID=Europe/London:20221118T120000
DTSTAMP:20260403T224813
CREATED:20220928T101153Z
LAST-MODIFIED:20220928T101310Z
UID:10090-1668762000-1668772800@www.m4rd.org
SUMMARY:Understanding ME/CFS\, symptom crossover with hEDS/HSD and implications for Long Covid
DESCRIPTION:Dr Sue Pemberton PhD is a qualified occupational therapist who was involved in setting up the Leeds based Chronic Fatigue Syndrome Service in 1990\, one of the first NHS clinics specifically for the condition. She wrote the original therapy programme and worked clinically with the service for over 22 years\, in addition to holding a number of management positions within the NHS. \nSue has co-authored the self-help manual Fighting Fatigue: a practical guide to managing the symptoms of CFS/ME\, Hammersmith Press and contributed to the British Association for CFS/ME Therapists Manual. \nSue will explore the implications of Chronic Fatigue Syndrome and Long Covid
URL:https://www.m4rd.org/event/10090/
LOCATION:LIVE STREAM
CATEGORIES:HCPs,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2022/09/sue-p.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221124
DTEND;VALUE=DATE:20221126
DTSTAMP:20260403T224813
CREATED:20220916T115556Z
LAST-MODIFIED:20220916T115556Z
UID:9978-1669248000-1669420799@www.m4rd.org
SUMMARY:Get Started with Genomics CPD Course
DESCRIPTION:The implementation of next-generation sequencing technologies has enabled genomics to become a mainstream subject in medicine. The UK has now adopted Whole Genome Sequencing (WGS) in clinical practice\, and the use of genomic sequencing technologies in healthcare has become widespread across many countries. Healthcare professionals across the world need the skills to understand genomics and what it means for their patients. \nThis course will provide participants with the basic principles of genomic medicine. The content will include the distinction between genetics and genomics and a focus on understanding the different modes of inheritance. With a focus on practical case studies and a workshop-style of delivery\, the course will offer the opportunity to engage with academics and fellow participants and build collaborative networks. \nCourse Leads\nProfessor Anna Murray – Associate Professor in Human Genetics\nDr Julia Baptista – Lecturer in Clinical Education\nSee the Speakers page for the full faculty list. \nDelivery Dates and Format\nThe course will be delivered on 24th and 25th Nov 2022 in a hybrid format (virtually and in-person at the University of Exeter) \nWho is it for?\nThe course is aimed at clinicians and other healthcare professionals who need an introductory course in genomics. This course would be an ideal access course for those wishing to pursue further studies\, in particular the MSc in Genomic Medicine. \nLearning Outcomes\nAt the end of the course the learner will be expected to be able to: \n\nDefine the key concepts of genetics and genomics\nUnderstand the main approaches to genomic testing and principles of variant classification\nUnderstand the main modes of inheritance in humans (autosomal dominant\, autosomal recessive\, X-linked\, and mitochondrial) and recognise their characteristic features and patterns\nUnderstand that genetic disorders might be inherited from an affected parent\, an unaffected parent\, both unaffected parents or arise spontaneously\nApply the knowledge of mode of inheritance in the context of a clinical report and the given family scenario\nBecome familiar with the basics of genome browsers to view gene information and interpret genomic information in clinical reports\n\nCertificate and Accreditation\nParticipants will receive a certificate of participation including both CPD points applied for through the Royal College of Physicians and learning outcomes\, which can be used towards your own professional development. \nFor more details about the course including fees and delivery see the course details page.
URL:https://www.m4rd.org/event/get-started-with-genomics-cpd-course/
LOCATION:University of Exeter\, St Luke's Campus\, Heavitree Road\, Exeter\, EX1 2LU\, United Kingdom
CATEGORIES:Genomics,Medical Students,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2022/09/pexels-edward-jenner-4033148.jpg
ORGANIZER;CN="University of Exeter Medical School":MAILTO:UEMS_CPD@exeter.ac.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221126
DTEND;VALUE=DATE:20221127
DTSTAMP:20260403T224813
CREATED:20220609T093342Z
LAST-MODIFIED:20220609T093342Z
UID:9581-1669420800-1669507199@www.m4rd.org
SUMMARY:RAREfest22: Educate\, Engage\, Empower
DESCRIPTION:FREE to attend\, RAREfest22 is a public-facing\, rare disease inspired festival featuring interactive talks\, demos and exhibits\, film and art showcasing ground-breaking science\, visionary technology and pioneering organisations improving lives and bringing hope to those living with rare conditions.\nAn award-winning festival that is as UNIQUE as the patients it champions. Featuring the brightest minds in rare disease research\, the innovators of life-changing tech\, the pioneers in rare disease medicine\, and the patients whose powerful voices must be heard. For the experts. For the curious. For everyone. For FREE. \nCambridge Rare Disease Network 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\, and working together\, the journey toward s better diagnosis\, treatment and support for patients and their families is smoother and more certain. \nBook now
URL:https://www.m4rd.org/event/rarefest22-educate-engage-empower/
LOCATION:The Guildhall\, Market Square\, Cambridge\, CB2 3QB
CATEGORIES:exhibition,Festival,Genetics,Genomics,Networking,Patient advocacy,Rare Diseases
ATTACH;FMTTYPE=image/webp:https://www.m4rd.org/wp-content/uploads/2022/06/https-cdn.evbuc_.com-images-286969269-134598541307-1-original.20220518-133206.webp
ORGANIZER;CN="CRDN":MAILTO:jo@camraredisease.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221208
DTEND;VALUE=DATE:20221209
DTSTAMP:20260403T224813
CREATED:20220930T125101Z
LAST-MODIFIED:20220930T125101Z
UID:10118-1670457600-1670543999@www.m4rd.org
SUMMARY:Advances in renal genetics
DESCRIPTION:Attend this meeting for a comprehensive update on the clinical management of genetic and inherited kidney diseases\, including cystic and basement membrane disorders\, podocytopathies and tubulopathies\, in both children and adults. \nWe will review the evolution of new genomic methodologies\, including how they are informing our knowledge of kidney disease pathogenesis and outcomes\, and their potential impact on patient care in the future. \nAims of the event include: \n\nTo describe recent developments in the management of inherited kidney diseases\nTo consider the present and future impacts of novel genomic approaches in nephrology\nTo explore the development of local and national genetic services in the NHS\n\nBook to attend this event in person or virtually. To view the rates and agenda\, please select your preference below.
URL:https://www.m4rd.org/event/advances-in-renal-genetics/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:Genetics,Royal Society of Medicine
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2022/09/Screenshot-2022-09-30-at-13.45.26.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230215T123000
DTEND;TZID=Europe/London:20230215T180000
DTSTAMP:20260403T224813
CREATED:20220812T120200Z
LAST-MODIFIED:20221028T104855Z
UID:9811-1676464200-1676484000@www.m4rd.org
SUMMARY:The Unusual Suspects: rare disease in everyday medicine
DESCRIPTION:We are delighted to announce our 10th annual symposium and\, for the first time since 2020\, it’s returning live and in-person!\nSAVE THE DATE… Join us on Wednesday 15th February 2023 at 1 Wimpole Street for M4RD’s annual symposium ‘The Unusual Suspects: rare disease in everyday medicine’. \nThe Unusual Suspects has been a popular event in the rare disease calendar for many years\, allowing healthcare professionals at all levels\, trainees and students to come together to learn more about the importance of understanding rare diseases as a whole\, with a large focus on improving awareness and management and the lived patient experience. \nFollowing our online symposiums in 2021 and 2022\, we are excited to be back in London hosting this event from the home of the Royal Society of Medicine\, in the Wheatley Room.  The theme this year will be on mental health and will follow the launch of our new MH module being launched on M4RD Learn in 2023. \nThis is the only medical meeting of its type in the UK that brings together stakeholders from across all sectors and rare diseases in order to teach those who don’t yet know much about rare disease. We will hear from patients\, parents\, advocates and clinicians. \nThis event will also be available to live stream if you are unable to join us in person. \nClick here for more details\, including our programme and how to register.
URL:https://www.m4rd.org/event/the-unusual-suspects-rare-disease-in-everyday-medicine-2/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:M4RD,Royal Society of Medicine
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2022/08/Wednesday-15th-February-2023.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230222T180000
DTEND;TZID=Europe/London:20230222T193000
DTSTAMP:20260403T224813
CREATED:20230222T113454Z
LAST-MODIFIED:20230222T113454Z
UID:10462-1677088800-1677094200@www.m4rd.org
SUMMARY:Shining a Light on Silver-Russell Syndrome (SRS) on Rare Disease Day
DESCRIPTION:Join us for this ONLINE event on Rare Disease Day 2023\, find out about how rare genetic conditions\, like SRS\, are diagnosed and hear about what it’s like to live with Silver-Russell syndrome (SRS). \n\n\nFeaturing \n\nGracie Taylor\, Patient Voice (& Science Insights Alumni)\nProf Mary Porteous\, SE Scotland Rare Disease Diagnostic Service\nDr Emma Wakeling\, Clinical Genetics and Genomics Consultant\, Great Ormond Street Hospital  & Medical Advisor to Child Growth Foundation\nJeff Bolton\, Chair\, Child Growth Foundation
URL:https://www.m4rd.org/event/silver-russell-syndrome/
LOCATION:ONLINE
CATEGORIES:Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/02/image.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230228
DTEND;VALUE=DATE:20230301
DTSTAMP:20260403T224813
CREATED:20220916T110923Z
LAST-MODIFIED:20220930T084052Z
UID:9963-1677542400-1677628799@www.m4rd.org
SUMMARY:BPSU Annual Symposium
DESCRIPTION:The BPSU is currently planning to hold its yearly Symposium on rare diseases on 18th October 2022 and are in the process of compiling an agenda for the day\, which will take place at the RCPCH council chambers on 13th October 2022. \nJoin the BPSU\, NHS clinicians\, and patient groups for what is looking to be an informative event which will acknowledge the current work conducted on rare diseases in children and raising awareness of such. \nFor more information email Charlotte Lewis
URL:https://www.m4rd.org/event/bpsu-annual-symposium/
LOCATION:RCPCH Council Chambers\, 5-11 Theobald's Road\, London\, WC1X 8SH\, United Kingdom
CATEGORIES:BPSU,Conference,Networking,Patient advocacy
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/05/bpsu_rare_disease_day_event_-_for_30_year_report-e1559159584897.jpg
ORGANIZER;CN="BPSU":MAILTO:enquiries@rcpch.ac.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230228T110000
DTEND;TZID=Europe/London:20230228T130000
DTSTAMP:20260403T224813
CREATED:20230223T104435Z
LAST-MODIFIED:20230223T104435Z
UID:10466-1677582000-1677589200@www.m4rd.org
SUMMARY:Conducting rare disease research in the context of clinical care
DESCRIPTION:11.00 am Introduction and welcome Tony Lockett (CPMR London) \n11.05 am Dr Lucy McKay (Medics for rare diseases)- Can Medical Education\nHelp in the Conduct of Research in Rare Diseases? \n11.30 am Dr Robin Lachman (University College London) – Does\nEvidence-based Medicine Work for Rare Diseases? \n12.00 pm Fleur Chandler (Sanofi) Putting it into perspective\, a view from\nboth sides for evidence generation in rare paediatric conditions \nJoin the meeting here 
URL:https://www.m4rd.org/event/conducting-rare-disease-research-in-the-context-of-clinical-care/
LOCATION:ONLINE
CATEGORIES:Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/02/Screenshot-2023-02-23-at-10.43.08.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230228T190000
DTEND;TZID=Europe/London:20230228T203000
DTSTAMP:20260403T224813
CREATED:20230120T150914Z
LAST-MODIFIED:20230120T152039Z
UID:10328-1677610800-1677616200@www.m4rd.org
SUMMARY:Beyond the Student Voice Prize
DESCRIPTION:The Student Voice Prize is delighted to invite you to our second annual virtual rare disease day event ‘Beyond the Student Voice Prize;’ an opportunity to connect with peers and patient group leaders to learn more about the rare community and how you can get involved and continue your advocacy.\nWhat can you expect? \nThe event will be an informal opportunity for you to meet fellow entrants to the competition\, connect with patient group advocates and hear from those working actively in rare diseases. There will be a series of short inspiring presentations from a cross-section of individuals as well as handy guidance for getting more involved with the rare disease community and building a focus on rare into your career. \nWho is this event for?  \n\nPrevious entrants of the Student Voice Prize\nProspective entrants of the Student Voice Prize\nMedical students interested in learning more about rare conditions and getting involved in the community\nRare disease patient group leaders who have been involved in the Student Voice Prize in the past\nRare Disease patient group leaders who haven’t been involved in the Student Voice Prize in the past- all are welcome!\n\nWhy should you attend?  \nRare diseases are collectively common\, meaning you are likely to come across them in one form or other in your medical career. Learning about them early can better prepare you as a future clinician and can ensure better outcomes for individuals diagnosed and living with rare conditions. \nRare diseases are gaining increasing momentum as pressing health priorities worldwide\, compounded by advances such as the first-ever UN Resolution on persons with rare diseases and the new UK Rare Diseases Framework. There has never been a better time to get involved with the rare disease community to help create change\, raise awareness and drive your own personal development. \nThe Student Voice Prize is much more than just a competition. It has proven itself to be a gateway for many medical students\, nurses and scientists who want to engage with patients from across the medical spectrum\, particularly in rare disease. This is your chance to go beyond and become an advocate for a large\, but poorly represented community and help make a real difference in the lives of rare disease patients and their families.\n———————————————————————————————–\nThe Student Voice Prize is a project run in collaboration by Medics4RareDiseases (Charity No 1183996) and Beacon (Charity No 1149646) \n 
URL:https://www.m4rd.org/event/btsvp/
LOCATION:LIVE STREAM
CATEGORIES:Rare Diseases,Student Voice Prize,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/01/stvp.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230306T180000
DTEND;TZID=Europe/London:20230306T193000
DTSTAMP:20260403T224813
CREATED:20230206T113734Z
LAST-MODIFIED:20230206T114132Z
UID:10437-1678125600-1678131000@www.m4rd.org
SUMMARY:Reframing Rare Disease
DESCRIPTION:It may be impossible for all doctors to have knowledge of more than 7\,000 recognised rare diseases. However\, it is feasible for all future and current medical professionals to learn when to suspect a rare disease\, to appreciate that rare diseases are collectively common and to recognise the exceptional challenges faced by those affected. \nAt this FREE event\, you can expect to learn about rare disease from those with lived experience and from those working in this area in healthcare. Join Medics 4 Rare Diseases (M4RD) and the Clare College Medical and Veterinary Society in equipping medical students and doctors with the knowledge and tools they need to #DareToThinkRare. \nPerfect for medical professionals and students wanting to learn more about and get involved in Rare Diseases. \nBook Now 
URL:https://www.m4rd.org/event/reframing-rare-disease/
LOCATION:Clare College Medical and Veterinary Society
CATEGORIES:Conference,Lectures,M4RD,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/02/Cambridge-Twitter-Post.png
END:VEVENT
END:VCALENDAR