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X-WR-CALDESC:Events for Medics For Rare Disease
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DTSTART;VALUE=DATE:20230317
DTEND;VALUE=DATE:20230319
DTSTAMP:20260418T154446
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 The child may appear very withdrawn during this stage and this often leads to a misdiagnosis of being on the autistic spectrum.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
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ORGANIZER;CN="Rett UK":MAILTO:keren.decoito@rettuk.org
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DTSTART;TZID=Europe/London:20230306T180000
DTEND;TZID=Europe/London:20230306T193000
DTSTAMP:20260418T154446
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
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DTSTART;TZID=Europe/London:20230215T123000
DTEND;TZID=Europe/London:20230215T180000
DTSTAMP:20260418T154446
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
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