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DTSTART;TZID=Europe/London:20210510T130000
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DTSTAMP:20260424T150503
CREATED:20210416T092914Z
LAST-MODIFIED:20210416T093459Z
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SUMMARY:RCPH-BPSU series: Bechet's Syndrome in children and young people
DESCRIPTION:Behçet’s syndrome is a rare multi-system inflammatory condition characterised by recurrent oral ulceration\, genital ulceration\, eye and skin involvement.  In this webinar\, the panel of speakers will present the findings of the 2017 BPSU study.\n  \nSpeakers:\n\nDr Clare Pain\, Consultant Paediatric Rheumatologist\, Alder Hey Children’s NHS Foundation Trust\, Lead of Paediatric Behcet’s service at Alder Hey and chief investigator on BPSU Behcet’s study\nDr Daniel Finn – StR in Oral Medicine\, Liverpool University Dental Hospital\nProfessor Robert Moots\nProfessor Paul Brogan\n\nLearning outcomes:\n\nUnderstanding how UK children are affected by Behçet’s syndrome\nImprove knowledge of differential diagnoses and investigations of Behçet’s like presentations including recurrent oral ulceration\nManagement of Behçet’s syndrome in children and young people\nThe role of genetic testing and monogenic mimics\nHow to manage recurrent oral ulceration
URL:https://www.m4rd.org/event/rcph-bpsu-series-bechets-syndrome-in-children-and-young-people/
LOCATION:ONLINE
CATEGORIES:Rare Diseases,Webinar
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ORGANIZER;CN="RCPCH-BPSU":MAILTO:events@rcpch.ac.uk
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DTSTART;TZID=Europe/London:20210513T170000
DTEND;TZID=Europe/London:20210513T180000
DTSTAMP:20260424T150503
CREATED:20210505T085830Z
LAST-MODIFIED:20210505T090258Z
UID:7882-1620925200-1620928800@www.m4rd.org
SUMMARY:Mobilising pathways to accommodate new transformative treatments - using CF as a case study
DESCRIPTION:Join OPEN HEALTH for a live webinar exploring the journey of RARE pathway transformation and the introduction of disease-modifying treatments as part of their Rare Thoughts and Outcomes series.\nLearn from the experiences of patients\, parents\, and physicians about how cystic fibrosis pathways are rapidly adapted and what learnings can be applied to other rare diseases to strive for positive outcomes for all. \nHopefully many more rare diseases will soon have disease modifying treatments that have the potential to transform patient lives. However if diagnostic\, treatment and management pathways are not ready or fit for purpose then patient access will be delayed. This panel will discuss recent experiences in Cystic Fibrosis during a time when disease modifying agents were introduced. The panel will discuss this revolution in the treatment of this disease through the eyes of patients\, parents and physicians to explore what can be applied to accelerate pathway development in other rare diseases. \nPanelists: \nTracey Daniels – Clinical Lead\, York Teaching Hospital Foundation Trust \nElla Balasa – Patient Advocate and Health Engagement Consultant \nEleanor Thistleton – Parent and Medical Communications Expert\, OPEN Health \nTom Smith – Patient Advocate and Life Science Public Engagement Expert \nPanel Chair – Gavin Jones\, Global Advisor\, Rare Diseases\, OPEN Health
URL:https://www.m4rd.org/event/mobilising-pathways-to-accommodate-new-transformative-treatments-using-cf-as-a-case-study/
LOCATION:ONLINE
CATEGORIES:Rare Diseases,Webinar
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