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X-WR-CALDESC:Events for Medics For Rare Disease
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DTSTART;TZID=Europe/London:20240221T120000
DTEND;TZID=Europe/London:20240221T180000
DTSTAMP:20260506T081648
CREATED:20230925T102622Z
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UID:11299-1708516800-1708538400@www.m4rd.org
SUMMARY:The Unusual Suspects: Rare Disease in Everyday Medicine 2024
DESCRIPTION:The aim of the meeting is to inform doctors that rare diseases are collectively common and relevant to every medical career.  Very different rare diseases face similar challenges\, including navigating healthcare which can be alleviated by a medical profession that understands what living with a rare disease means to a patient and their larger community. \nThe focus for this year’s event will be communication and inclusivity in rare disease. The majority of people living with rare conditions will never receive a disease-modifying treatment or benefit from a specialist service. Often a system built on evidence-based medicine doesn’t work for patients who have little evidence about their condition. This can leave their clinicians feeling helpless and the patient feeling isolated. \nThis session will help participants build on their listening and communication skills for the benefit of people living with untreatable long-term conditions. \nThe speakers confirmed for the event are: \n▪ Dr Lisa Kauffmann\, Consultant community paediatrician & Associate Medical Director at children’s community health services\, Manchester Local Care Organisation\n▪ Jono Lancaster\, Author of ‘Not All Heroes Wear Capes’\n▪ Hope Russell-Winter\, Ambassador for M4RD and Runner-up on The Voice UK\n▪ Kevin Ward\, NHS Healthcare Improvement Scotland WMTY movement\n▪Kerry Leeson\, CEO\, Breaking Down Barriers\n▪Aisha Seedat\, M4RD Patient Ambassador and her sister Saffiya Seedat who is an ardent advocate for individuals with rare diseases\n▪Leisha Devisetti – The winner of the Student Voice Prize 2023
URL:https://www.m4rd.org/event/the-unusual-suspects-rare-disease-in-everyday-medicine-3/
LOCATION:The Royal Society of Medicine
CATEGORIES:Royal Society of Medicine,Student Voice Prize
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/09/INSTAGRAM_POST_START_M4RD_UNUSUAL_SUSPECTS_2024_1080px_START_THE_COUNTDOWN.png
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230228T190000
DTEND;TZID=Europe/London:20230228T203000
DTSTAMP:20260506T081648
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
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DTSTART;TZID=Europe/London:20220228T183000
DTEND;TZID=Europe/London:20220228T200000
DTSTAMP:20260506T081648
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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