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DTSTART;TZID=Europe/London:20221118T090000
DTEND;TZID=Europe/London:20221118T120000
DTSTAMP:20260404T020351
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:20260404T020351
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:20260404T020351
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:20260404T020351
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:20260404T020351
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:20260404T020351
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:20260404T020351
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:20260404T020351
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:20260404T020351
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:20260404T020351
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
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230317
DTEND;VALUE=DATE:20230319
DTSTAMP:20260404T020351
CREATED:20230224T155726Z
LAST-MODIFIED:20230224T160321Z
UID:10478-1679011200-1679183999@www.m4rd.org
SUMMARY:RSE Network Support Meeting
DESCRIPTION:Rett syndrome is a rare\, genetic\, neurological disorder affecting mainly females (1:10\,000) and very few males. It is present from conception. After a period of ‘near normal’ development\, the child experiences a regression in key skills\, usually mobility\, speech and hand use between the ages of one and two years. The child may appear very withdrawn during this stage and this often leads to a misdiagnosis of being on the autistic spectrum. Multiple comorbidities appear post regression including epilepsy\, breathing disruption\, scoliosis\, gut and bowel problems. Whilst the disorder is genetic\, in the majority of cases it is not inherited. Rett syndrome is usually caused by a fault on a gene called MECP2 which is found on the X chromosome. People with Rett syndrome have profound and multiple physical and learning disabilities. They are totally reliant on others for support throughout their lives\, yet they are radiating love and enjoying their life to the fullest. \nWe are delighted that registration is now open for the Rett Syndrome Europe Network Support and Research Event. Many thanks to our funders The European Joint Programme for Rare Diseases Network Support Scheme and our sponsors Anavex\, Taysha\, Neurogene and Neuren for making this possible. \nThe main meeting is in Budapest\, Hungary with satellite meetings in the UK\, Netherlands\, Serbia\, Georgia\, Croatia and Turkey. The ‘in person’ satellite meetings are by invitation only but anyone can register to view the presentations which are being shown on 17/18 March 2023. They will also be available post event to view at a time of your choosing. \nWe have a limited number of places for people to attend the satellite meeting at The Angela Ruskin University\, Cambridge in person. It is free including lunch both days and dinner on the Friday evening. If you are interested in this opportunity to meet and network with several experienced Rett researchers and clinicians\, please email bjenner@rettsyndrome.eu
URL:https://www.m4rd.org/event/rse-network-support-meeting/
LOCATION:ONLINE
CATEGORIES:M4RD,Rare Diseases,Research,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/02/RSE-network-and-research-meeting.png
ORGANIZER;CN="Rett UK":MAILTO:keren.decoito@rettuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230325
DTEND;VALUE=DATE:20230327
DTSTAMP:20260404T020351
CREATED:20230303T100326Z
LAST-MODIFIED:20230303T100326Z
UID:10732-1679702400-1679875199@www.m4rd.org
SUMMARY:SFGH Global Health Conference
DESCRIPTION:Students for Global Health is excited to announce that our Annual Global Health Conference which will be held in Manchester over the weekend of March 25th-26th! \nStudents for Global Health is an organisation\, network and community. In our 20 year history\, we have evolved into the leading student voice for health\, representing students who are passionate about creating a fair and just world in which equity in health is a reality for all. \nThis conference is open to all students and graduates with an interest in global health\, as well as international students. This is an excellent opportunity for you to meet with like-minded individuals\, network with professionals in the field\, and gain valuable insights and knowledge on the latest developments in global health. \nWe will have speakers covering topics ranging from deconstructing colonial narratives within medicine and health to adolescent global health. \nThere is also an opportunity for those who have undertaken research or electives abroad to submit and present an abstract on any topic related to global or public health. Link to submit an abstract: https://forms.gle/VaFcSJkpQRovHMuW6 \nTransport and accomodation funding may also be available! For any queries regarding this\, please contact director@studentsforglobalhealth.org \nWe look forward to welcoming you all!
URL:https://www.m4rd.org/event/sfgh-global-health-conference/
LOCATION:Manchester Royal Infirmary
CATEGORIES:Conference,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/03/early-bird-tickets.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230413
DTEND;VALUE=DATE:20230417
DTSTAMP:20260404T020351
CREATED:20230327T124659Z
LAST-MODIFIED:20230327T124727Z
UID:10774-1681344000-1681689599@www.m4rd.org
SUMMARY:Aims Meeting
DESCRIPTION:AIMS Meeting [Annual International (bio)Medical Students Meeting] is the largest biomedical conference in Europe organized entirely by medical students\, gathering each year over a thousand participants from all the world. \nIt is held annually in Lisboa\, Portugal and is advocated by the Faculty of Medicine of the Lisbon Students’ Local Committee. \nAIMS Meeting highlights the importance of medical education for all students of health sciences through a diverse approach and is a platform to build bridges between biomedical students around the world. \nMarch of 2022 was marked by the one of the more ambitious editions of the AIMS Meeting so far! In 2023\, we are aiming even higher. \nThe registration process for the AIMS Meeting 2023 is now open! \nDon’t miss this oportunity to participate in the largest Biomedical meeting in Europe organized by students! You can attend in person or register to watch online. \nIf you have any questions\, contact us at support@aimsmeeting.org.
URL:https://www.m4rd.org/event/aims-meeting/
CATEGORIES:Conference
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/03/Screenshot-2023-03-27-at-13.45.51.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230420
DTEND;VALUE=DATE:20230422
DTSTAMP:20260404T020351
CREATED:20230314T161757Z
LAST-MODIFIED:20230314T161757Z
UID:10751-1681948800-1682121599@www.m4rd.org
SUMMARY:3rd International Conference on Lysosomal Diseases
DESCRIPTION:We are close to our “3rd International Conference on Lysosomal Diseases” which takes place 20-21 April 2023\, in London\, UK. \nThe conference is offering 35% DISCOUNT on registration fee to students and fellows. \nHere is the link for the programme https://med-lysosomal.com/congress-agenda/ \nThe abstract submission is open via the link https://med-lysosomal.com/abstracts/ \nPlease contact Rosemarie to receive the discount code for registration – rosemarie@bioevents-congress.com
URL:https://www.m4rd.org/event/3rd-international-conference-on-lysosomal-diseases/
CATEGORIES:Conference
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2023/03/20-21.4.23-Med-Lysosomal2023-save-the-date.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230420T173000
DTEND;TZID=Europe/London:20230420T190000
DTSTAMP:20260404T020351
CREATED:20230412T091403Z
LAST-MODIFIED:20230412T091403Z
UID:10800-1682011800-1682017200@www.m4rd.org
SUMMARY:LinkAGE Webinar: Repurposing drugs for rare disease
DESCRIPTION:Following on from the first three Genomics Education Programme webinars in the LinkAGE series\, the next talk followed by a live Q&A will be broadcast on Thursday 20 April at 5:30pm. \nIn this pre-recorded webinar\, Dr Hassan Shakeel will describe his work repurposing drugs for rare disease. This culminated in an algorithm that can screen clinically approved drugs for trial use in rare developmental disorders. \nFind out more about the webinar on the GEP event page. Receive a link to watch this exciting talk and join the Q&A by completing the registration form.
URL:https://www.m4rd.org/event/linkage-webinar-repurposing-drugs-for-rare-disease/
CATEGORIES:Conference
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/04/Screenshot-2023-04-12-at-09.58.16-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230429T090000
DTEND;TZID=Europe/London:20230429T163000
DTSTAMP:20260404T020351
CREATED:20230425T135606Z
LAST-MODIFIED:20230425T135606Z
UID:10828-1682758800-1682785800@www.m4rd.org
SUMMARY:Women in Healthcare: 3rd Annual Conference: Beyond the Ward
DESCRIPTION:Some more info we share for advertising:\nAre you a medical student or doctor who is interested in exploring unconventional career paths in medicine? Then we have the perfect event for you! BL Women In Healthcare proudly presents our 3rd Annual Conference: Beyond the Ward. \nThis year’s conference will take place online on Saturday\, 29th April 2023\, from 9.00am to 4.30pm. You will have the opportunity to hear from inspiring speakers who have pursued various career paths in medicine\, including MedTech\, humanitarian medicine\, expedition medicine\, medical education\, and more. We will also be holding interactive workshops geared towards portfolio building. \nThe conference is open to all\, so don’t miss out on this amazing opportunity to learn about exciting new career paths and network with like-minded individuals. \nSome of the highlights of the conference include speakers talking about their experiences in MedTech and AI\, the NHS Clinical Entrepreneurship Programme\, MSF (Doctors Without Borders)\, expedition medicine\, workshops about the Specialised Foundation Programme and leadership in medical school\, and so much more. \nAll ticket proceeds will be going to a local charity supporting women. Tickets are available here: https://www.qmsu.org/ents/event/18671/ \n\n \nThis event is definitely not one to miss! 
URL:https://www.m4rd.org/event/women-in-healthcare-3rd-annual-conference-beyond-the-ward/
LOCATION:ONLINE
CATEGORIES:Conference
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2023/04/women-in-healthcare.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230504T090000
DTEND;TZID=Europe/London:20230504T160000
DTSTAMP:20260404T020351
CREATED:20230327T121845Z
LAST-MODIFIED:20230327T121906Z
UID:10764-1683190800-1683216000@www.m4rd.org
SUMMARY:NHS East Genomics Showcase
DESCRIPTION:On Thursday 4th May 2023 NHS East Genomics will be holding an in-person Showcase event at the Kingsgate Conference Centre\, Peterborough. \nAs well as celebrating successes from their transformation projects across a range of cancers\, rare diseases and conditions\, plus how they are helping to support and develop their local NHS workforce\, delegates will also benefit from networking opportunities through their interactive ‘Marketplace’\, hearing from expert guest speakers – including first-hand patient stories – and learning more about: \nhow they are working with partners to increase awareness of\, and access to genomics and genetic testing\ntheir work to reduce health inequalities and improve equity of access to genomic medicine\nspecific work on a range of cancer and rare disease pathways\nawareness raising\, community engagement\, screening and earlier diagnosis to improve detection rates and patient outcomes\nhow they are representing the public and patient voice\nhow they are supporting their local NHS workforce to embed genomic medicine\nthe road ahead: what’s next for genomics in the region?\nPlease note this event will be in-person only\, with no virtual joining option.
URL:https://www.m4rd.org/event/nhs-east-genomics-showcase/
LOCATION:Kingsgate Conference Centre
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2023/03/genomicsshowcase.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230506
DTEND;VALUE=DATE:20230507
DTSTAMP:20260404T020351
CREATED:20230201T135926Z
LAST-MODIFIED:20230201T140105Z
UID:10403-1683331200-1683417599@www.m4rd.org
SUMMARY:Living Rare Forum
DESCRIPTION:Hosted at the Renaissance Downtown Hotel\, the rare disease community will come together in Washington DC for a day of learning\, networking and fun! Hear real stories from the community and gain practical knowledge to help you live your best life while navigating your rare disease journey. \nThe living rare forum is your opportunity to connect with others in the rare disease community. \nBy attending\, you will have access to: \n\nSessions on valuable topics\, such as: Finding and Living Your New Normal with a Rare Disease\, Drug Development for Rare Diseases\, Rare Breakthroughs: Now and On the Horizon\, and more.\nAn opportunity to connect with fellow community members at the Friday welcome reception and Saturday breakfast.\nHot topic discussion lunch tables.\nEvent swag! Register by April 1st to be guaranteed a t-shirt.\n\nCan’t attend in person? You can also attend virtually! \nTo book or to learn more about this event\, visit their site.
URL:https://www.m4rd.org/event/living-rare-forum/
LOCATION:Renaissance Downtown Hotel\, Washington DC
CATEGORIES:Conference,Networking
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230510
DTEND;VALUE=DATE:20230511
DTSTAMP:20260404T020351
CREATED:20230426T091158Z
LAST-MODIFIED:20230426T091522Z
UID:10833-1683676800-1683763199@www.m4rd.org
SUMMARY:Patient Centricity and Engagement
DESCRIPTION:29 Industry Leaders From Pharma\, Advocacy Groups & Patients Themselves Share Their Latest Insights Into Driving Forward Patient Engagement Through Embedded Partnerships In Just One Day! \n\n\nAdvanced\, High-Impact\, Value-Adding Strategies For Patient Centricity\, Engagement & Partnerships \n\n\n\n\nDrive End-To-End Patient Engagement & Break Through Longstanding Barriers To Patient Centricity – Effectively Collaborate With Advocacy Groups & Stakeholders To Focus Around The Patient & Their Needs – Embed D&I At The Heart Of Engagement Strategies – Deliver High-Impact Patient Experiences & Digital & Virtual Engagement \nWebsite
URL:https://www.m4rd.org/event/patient-centricity-and-engagement/
CATEGORIES:Conference
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230512
DTEND;VALUE=DATE:20230520
DTSTAMP:20260404T020351
CREATED:20230327T123738Z
LAST-MODIFIED:20230411T093807Z
UID:10769-1683849600-1684540799@www.m4rd.org
SUMMARY:EDIRA Conference: An Inclusive conference about Inclusion
DESCRIPTION:Theme: Diversity- Dialogue and Development!\nIn May\, the United Nations ‘World Day for Promoting Cultural Diversity for Dialogue and Development’ will be taking place. This day will raise awareness about the essential role that intercultural dialogue has\, in bringing positive change. This theme has underpinned the development of the EDIRA conference.\nThe ultimate aim of the EDIRA project is to co-create an inclusive research framework\, which will provide practical guidance for practitioners. \nEquality\, Diversity and Inclusive Research Association (EDIRA) Conference. \n(Greenwich Mean Time: the conference will be held in English). \nIn person in Cardiff\, Wales on 11.30am 12th May 2023. \nOn-line on 11.30am 19th May 2023. (FREE to members of the Community Network). \n  \nIn-person event: https://www.eventbrite.co.uk/e/edira-conference-in-person-edira-campaign-launch-party-tickets-521189250077 \nOnline event: https://www.eventbrite.co.uk/e/565518319517 \n  \n  \n 
URL:https://www.m4rd.org/event/edira-conference-an-inclusive-conference-about-inclusion/
LOCATION:Edira Conference 2023
CATEGORIES:Conference
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2023/03/ediraconference.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230522T073000
DTEND;TZID=Europe/London:20230522T213000
DTSTAMP:20260404T020351
CREATED:20230504T094649Z
LAST-MODIFIED:20230504T094649Z
UID:10859-1684740600-1684791000@www.m4rd.org
SUMMARY:Pint of Science Festival
DESCRIPTION:Our Rare Mind and Rare Body events for the International Pint of Science Festival are now live! \nJoin us for engaging research talks and interactive activities in the pub with leading Cambridge experts on May 22 and 24. \nTo view the full programme click here
URL:https://www.m4rd.org/event/pint-of-science-festival/
CATEGORIES:Conference
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230623T150000
DTEND;TZID=Europe/London:20230623T170000
DTSTAMP:20260404T020351
CREATED:20230615T132335Z
LAST-MODIFIED:20230615T132335Z
UID:11045-1687532400-1687539600@www.m4rd.org
SUMMARY:Journal Club: On the 12th Day of Christmas\, a statistician said to me...
DESCRIPTION:The month’s leading up to Christmas are a magical time for medical research. The impending holiday season creates a dynamic upsurge in productivity\, with researchers finding time to finish off statistical analyses\, draft manuscripts and respond to reviewers comments. This activity leads to a plethora of submissions to journals such as The BMJ in December\, so that researches can finish the year with a sense of academic achievement and enjoy the festivities with their loves ones. \nIn this talk\, Professor Richard Riley will discuss 12 of the most common issues enountered during a  statistical peer review at The BMJ\, as identified by a survey of our statistical editors. \nThe topics will be presented with real examples and the talk is aimed as a broad audience\, aiming to shine a Christmas star towards better statistical practice. \nYou can register for the event Here \n 
URL:https://www.m4rd.org/event/journal-club-on-the-12th-day-of-christmas-a-statistician-said-to-me/
LOCATION:ONLINE
CATEGORIES:Conference,Genetics
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/06/Screenshot-2023-06-15-at-14.23.05.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230719T123000
DTEND;TZID=Europe/London:20230719T150000
DTSTAMP:20260404T020351
CREATED:20230710T103746Z
LAST-MODIFIED:20230710T103746Z
UID:11098-1689769800-1689778800@www.m4rd.org
SUMMARY:Rare @ Manchester - 1st Anniversary Celebration Event
DESCRIPTION:We are thrilled to invite you to this special event to mark the one-year anniversary of the Manchester Rare Conditions Centre. \nThis event will highlight the significant strides Manchester has made in improving the lives of individuals with rare conditions. \nThe aim of this celebration is to showcase the progress the centre has made in the last year\, with speakers from our specialist clinical services\, our research theme and academy. \nFull agenda to be announced. \nDue to limited capacity we encourage you to confirm your attendance as soon as possible.
URL:https://www.m4rd.org/event/rare-manchester-1st-anniversary-celebration-event/
LOCATION:Citylabs 1.0 Nelson Street Manchester M13 9NQ
CATEGORIES:Conference,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2023/07/manchester-rare-conditions-centre.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230720T133000
DTEND;TZID=Europe/London:20230720T180000
DTSTAMP:20260404T020351
CREATED:20230531T133901Z
LAST-MODIFIED:20230531T143336Z
UID:10998-1689859800-1689876000@www.m4rd.org
SUMMARY:Medicine and Me: Young sudden cardiac death
DESCRIPTION:Medicine and Me meetings aim to provide an outline of current best practice and future updates for important conditions. They give a direct voice to patients and carers\, enabling them to discuss their concerns and reflections on the impact of diagnosis\, investigation and management. Physicians\, surgeons and indeed all healthcare professionals continue to learn from and be inspired to improve care by hearing directly from patients. \nIn the UK alone\, 12 seemingly healthy people under the age of 35 die from undiagnosed cardiac conditions every week\, otherwise known as young sudden cardiac death. \nJoin us for an event\, run in association with the charity Cardiac Risk in the Young\, to learn about the latest developments in our understanding of the causes and prevention of young sudden cardiac death\, and how to ensure the best quality of life for those living with diagnosed cardiac conditions. \nParticipants will have the opportunity to hear from some of the world’s leading experts in inherited cardiac conditions and ask questions about their experiences providing support and dealing with affected families. \nAttend this event to gain an understanding of: \n\nThe causes and prevention of young sudden cardiac death\nMethods for early identification of high-risk individuals\nProviding optimal care for patients with diagnosed cardiac conditions\nHow to manage and support affected families\nAreas where further research is needed\n\nGet your tickets here 
URL:https://www.m4rd.org/event/medicine-and-me/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:Conference,M4RD
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230731T170000
DTEND;TZID=Europe/London:20230731T180000
DTSTAMP:20260404T020351
CREATED:20230710T105237Z
LAST-MODIFIED:20230710T105237Z
UID:11103-1690822800-1690826400@www.m4rd.org
SUMMARY:Beyond the clinic: Sickle Cell Disease
DESCRIPTION:This webinar continues a new series of webinars that highlights the lived experiences behind genetic conditions. In an effort to highlight experts outside of the medical field the Medical Genetics Section will be using its platform to allow people with lived experience and other stakeholders to provide insight into genetic conditions\, that are usually taught from a biomedical perspective. \nThis meeting focuses on Sickle Cell Disease\, the most common rare genetic condition in the UK. Despite this fact people with Sickle Cell Disease still have considerable unmet needs including lack of access to treatment and investment in research. The treatment of patients with Sickle Cell Disease has also made news headlines in recent times due to failings in the health system. In this meeting we will hear from advocates in this area to understand the needs of patients and how we can better serve this community. \nWe will also hear from contributors to The No-One’s Listening report published by The Sickle Cell Society and The All Party Parliamentary Group for Sickle Cell and Thalassaemia. \nThis meeting aims to: \n\nRaise awareness of how Sickle Cell Disease impacts families and communities\nHighlight the unmet needs of patients living with Sickle Cell Disease\nLearn from the outcomes of The No-one’s Listening Report\n\nThis is an online event
URL:https://www.m4rd.org/event/beyond-the-clinic-sickle-cell-disease/
LOCATION:The Royal Society of Medicine
CATEGORIES:Webinar
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230906T140000
DTEND;TZID=Europe/London:20230906T160000
DTSTAMP:20260404T020351
CREATED:20230825T093051Z
LAST-MODIFIED:20230825T093330Z
UID:11221-1694008800-1694016000@www.m4rd.org
SUMMARY:Living with Uncertainty & Impact of Trauma Mental Wellbeing Webinar
DESCRIPTION:People affected by a rare and undiagnosed condition live with an accumulative impact on their mental wellbeing. Specifically at an individual level\, people living with a rare disease (PLWRD) can have an associated mental health co-morbidity\, and at a population level\, the community live with the increased psychological impact associated with the rare disease journey across all stages of life. Furthermore\, the rare disease community has increased exposure to social inequality and discrimination\, which are risk factors affecting poor mental wellbeing. The rare disease community has identified the need to look beyond the physiological symptoms of a rare condition\, and recognise the importance of psychological support as a fully integrated part of the coordination of care. Without support\, there will continue to be a detrimental impact on the mental health of those affected by rare conditions\, hindering them from effective participation in society. \nThis webinar will begin by breaking down the biopsychosocial continuum and addressing the intersectional needs of our community. It will then move on to a panel discussion on living with uncertainty and the impact of trauma\, ending with a discussion on the impact of living with congential malformations. \nThe outcome of the webinar will be the launch of a public call for expressions of interest to join the new EURORDIS Mental Wellbeing Partnership Network\, where patient representatives will partner with experts to identify common mental health needs and inform EURORDIS’ strategic and policy action.
URL:https://www.m4rd.org/event/living-with-uncertainty-impact-of-trauma-mental-wellbeing-webinar/
LOCATION:ONLINE
CATEGORIES:Conference,Webinar
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230926T093000
DTEND;TZID=Europe/London:20230926T160000
DTSTAMP:20260404T020351
CREATED:20230713T090812Z
LAST-MODIFIED:20230713T091949Z
UID:11109-1695720600-1695744000@www.m4rd.org
SUMMARY:Breaking Down Barriers
DESCRIPTION:This is the first opportunity for the BDB network to get together in person since lockdown! \n\n 26th September 2023 – London\n\nRegistration will be from 9:45 am\nStart 10:00am\nFinish 4:00pm\nLunch will be provided.\nOur focus is on bringing the network together\, strengthening ties and finding opportunities for collaboration. \nOur keynote speakers (to be announced soon) will introduce key changes in the world of genetic services\, testing and research. \nThe workshops are: \n\nEngaging Excluded Communities.\nWorking together on Patient and Public Involvement and learning from people with lived experience.\nSeizing new opportunities in the genetics field\n\nYou will have an opportunity to explore two of the above. \nThe afternoon will include space for us to explore up to three hot topics or challenges. These will be identified by members in attendance. \nThe workshop will identify challenges for individual member organisations and shared challenges across the network.  We will discuss possible solutions\, ways to collaborate and explore how BDB can support you and your work. \nYou can send up to two members of your team to the event but if you would like more people to attend then please get in touch and we can add you to a waiting list. If there are practical challenges to your participation\, please do give us a call to discuss them. We will do our best to make the events as accessible to the whole membership as possible. Get in touch with Catherine by email catherine.lewis@alstrom.org.uk to reserve your place today.
URL:https://www.m4rd.org/event/breaking-down-barriers/
LOCATION:London
CATEGORIES:Conference
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230930T100000
DTEND;TZID=Europe/London:20230930T170000
DTSTAMP:20260404T020351
CREATED:20230720T092211Z
LAST-MODIFIED:20230720T092423Z
UID:11123-1696068000-1696093200@www.m4rd.org
SUMMARY:WS Conference
DESCRIPTION:You are invited to attend our annual conference on Saturday 30th September 2023\, at Mercure Daventry Court Hotel\, Sedgemoor Way\, Daventry\, NN11 0SG 10.00-17.00 (Registration from 9.00 am). \nYou will have the chance to speak to medical experts from the UK and abroad\, as well as the chance to meet other families/individuals affected by WS.  There will be workshops as well to take part in. This event is open to anyone affected by or with an interest in Wolfram Syndrome. \nFor more information or to book your place(s)\, please go to \nhttp://wolframsyndrome.co.uk/ws-conference/ \nEmail: admin@wolframsyndrome.co.uk \nTelephone: 01903 211358 \nLAST DATE TO BOOK FRIDAY 8TH SEPTEMBER 2023. \nThe Wolfram Syndrome Global Awareness Day is 1st October 2023. WS groups from around the world will be encouraging their communities to take part in fundraising & the raising of awareness for this condition. More information can be found on the website https://www.globalwsday.org/ .
URL:https://www.m4rd.org/event/11123/
LOCATION:Mercure Daventry Court Hotel
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231009
DTEND;VALUE=DATE:20231011
DTSTAMP:20260404T020351
CREATED:20230807T094529Z
LAST-MODIFIED:20230807T094711Z
UID:11200-1696809600-1696982399@www.m4rd.org
SUMMARY:Annual Lafora Disease Science Symposium
DESCRIPTION:Lafora disease researchers and clinicians at Instituto delle Scienze Neurologiche di Bologna (ISNB) IRCCS will host the 8th Annual Lafora Disease Science Symposium in Bologna\, Italy from October 9-10\, 2023. \nChelsea’s Hope is hosting registration. Please register individually to attend the in-person Symposium. If you can’t make it in person\, we encourage you to register and indicate your interest in receiving the recordings after the conference.
URL:https://www.m4rd.org/event/annual-lafora-disease-science-symposium/
LOCATION:Bologna
CATEGORIES:Conference
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20231012T090000
DTEND;TZID=Europe/London:20231012T173000
DTSTAMP:20260404T020351
CREATED:20230628T140925Z
LAST-MODIFIED:20230628T141426Z
UID:11079-1697101200-1697131800@www.m4rd.org
SUMMARY:CamRare's RAREsummit23
DESCRIPTION:A platform for change\nCamRARE’s RAREsummit23 welcomes and unites patients\, advocates\, experts and leaders to address the challenges faced by people affected by rare diseases. By reflecting on progress made\, showcasing best practices and new developments\, sharing knowledge and experience\, and finding ways to work together\, the journey towards better diagnosis\, treatment and support for patients and their families is smoother and more certain.\nOn Thursday 12 October 2023\, we will gather at the Wellcome Genome Campus for our 6th RAREsummit – a flagship CamRARE event gathering 300 great minds in rare diseases to make connections\, exchange ideas and openly debate possibilities. \n“RAREsummit has turned my growing curiosity in Rare Diseases into a reality. I was both able to connect with some amazing people and be inspired by the passion and activity going on throughout this community.”\nThrough RAREsummit23\, we aim: \n\nto raise awareness of rare conditions and their impact\nto showcase exemplars of impactful collaboration between stakeholders\, with patients at the heart\nto bring all stakeholders in rare diseases together as equals 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 by working together with greater efficiency\, collaboration and success\n\nWhy attend? Learn something new\, be inspired\, meet people\, add value\, collaborate.\n\nBuild your network with 300 biotechnology\, pharma and startup leaders\, innovators\, patients and patient group CEOs\, healthcare professionals\, policy-makers\, CROs\, researchers\, investors and students assembled.\nMeet\, mingle and hold crucial discussions with potential partners from local and global arenas.\nTake away practical strategies and fresh ideas.\nParticipate in interactive workshops and Dragon’s Den style tech solutions sessions as an innovator or an audience ‘judge’.\nHear from and put questions to key opinion leaders from the patient\, scientific\, industry\, medical\, and policy sectors.\n\nThemes will include:\n\nProgress in diagnostics – where are we now? What does the future hold? Exploring a broad range of diagnostic tools and strategies\nYoung Voices – have we listened? Does the Rare Disease Framework reflect what young people want and need?\nRare researchers’ poster and pitch – showcasing novel academic and translational research\, the bedrock of better understanding.\nExploring funding challenges and opportunities for this vital research\nCan we fix the everyday challenges of rare patients with technology? In collaboration with Eastern Academic Health Science Network – a live Dragon’s Den Tech solution pitching session.\nTurning the research paradigm on its head. Showcasing patient-led research.\nGene therapies – where are we now and what does the future hold?\nPractical workshops – themes emerging …get in touch if you have a proposal or a wishlist!\nNetworking\, Patient Journey and research poster gallery\, exhibits\n\nBook now!
URL:https://www.m4rd.org/event/camrares-raresummit23/
CATEGORIES:Conference
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END:VCALENDAR