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X-WR-CALDESC:Events for Medics For Rare Disease
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DTSTART;TZID=Europe/London:20230215T123000
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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
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230222T180000
DTEND;TZID=Europe/London:20230222T193000
DTSTAMP:20260529T200108
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
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20230228
DTEND;VALUE=DATE:20230301
DTSTAMP:20260529T200108
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
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230228T110000
DTEND;TZID=Europe/London:20230228T130000
DTSTAMP:20260529T200108
CREATED:20230223T104435Z
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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
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DTSTART;TZID=Europe/London:20230228T190000
DTEND;TZID=Europe/London:20230228T203000
DTSTAMP:20260529T200108
CREATED:20230120T150914Z
LAST-MODIFIED:20230120T152039Z
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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
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