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X-WR-CALDESC:Events for Medics For Rare Disease
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DTSTART;TZID=Europe/London:20211208T190000
DTEND;TZID=Europe/London:20211208T203000
DTSTAMP:20260403T223735
CREATED:20211109T091255Z
LAST-MODIFIED:20211202T100002Z
UID:8566-1638990000-1638995400@www.m4rd.org
SUMMARY:Diagnosis and Management of Rare Diseases
DESCRIPTION:This FREE live 90-minute webinar will focus on the diagnosis and management of rare diseases\, in particular haematological conditions.\nThe fundamentals of a rare disease – what is it? Who is affected? What’s impact and challenges when a condition is rare? What do rare conditions have in common? How can clinicians seek help\, advice and alleviate some of the burden of rarity. The webinar will focus on both generic issues relevant to patients and clinicians and also a detailed look at some example haematological conditions. The webinar will include practical examples and case based discussions. \nLearning Outcomes: \n\nAppreciate that rare conditions can impact patients in similar ways\nHow to approach potential rare diseases from a primary care viewpoint\nRelevance of rare diseases to your clinical practice\, how you might recognise them and when to ask for advice/refer\nSpecific haematological learning for example in sickle cell disease and haemophilia\nIdentify resources that can support you and your patient\n\nThere will be plenty of time in this webinar for Q&A. \nSpeakers will include: \nDr Lucy McKay\, CEO of Medics4RareDiseases\nDr William Evans\, Chairman NPUK\nMrs Karen Harrison\, Alex The Leukodystrophy Charity \n 
URL:https://www.m4rd.org/event/rare-blood-diseases/
LOCATION:ONLINE
CATEGORIES:Blood,clinical,RCGP,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/11/RCGP-event-1920-x-1080-px.png
ORGANIZER;CN="Royal College of General Practioners":MAILTO:info@rcgp.org.uk
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DTSTART;TZID=Europe/London:20211214T110000
DTEND;TZID=Europe/London:20211214T123000
DTSTAMP:20260403T223735
CREATED:20211119T093833Z
LAST-MODIFIED:20211119T093833Z
UID:8625-1639479600-1639485000@www.m4rd.org
SUMMARY:Maximising engagement with healthcare professionals
DESCRIPTION:Join this webinar to explore the practical things patient groups can do to make sure they are engaging with HCPs in the most beneficial way.\nMost rare diseases are not concentrated in one area or country and do not affect one singular body system\, which makes finding healthcare professionals (HCPs) or specialists who understand them a real challenge for patients and patient organisations. Yet\, it is often a top strategic priority for patient organisations to find and engage with these professionals to drive faster diagnoses\, better understanding of and research into rare conditions. \nThis can be a real challenge when most HCPs have a very limited knowledge of rare conditions. HCPs often look straight to google for their research where they can be met with misinformation and do not always find the patient organisations that are the real experts straight away. Thus\, it falls onto the shoulders of these patient organisations to make themselves more visible and receptive to engagement with healthcare professionals. Whether at a basic operational level\, an organisational level\, through external collaborations or even by working with the organisations such as the NHS and NICE. \n\n\n\n\nThis webinar will:  \n\n\n\n\n\n\n\n\n\n\n\n\n\nExplore the different levels on which patient organisations can base their engagement with medical professionals\nCover the practical things patients can do (no matter what size or capacity) to engage efficiently and sustainably with HCPs\nHighlight case studies from across the rare space of what different patient groups are doing\n\nPlease note: This is the first in a series of two webinars which will explore engagement with HCPs. \n\n\n\n\n 
URL:https://www.m4rd.org/event/maximising-engagement-with-healthcare-professionals/
CATEGORIES:Patient advocacy,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2021/11/unnamed-13.png
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
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