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X-WR-CALDESC:Events for Medics For Rare Disease (clone)
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DTSTART;VALUE=DATE:20220909
DTEND;VALUE=DATE:20220912
DTSTAMP:20260603T232232
CREATED:20220624T103702Z
LAST-MODIFIED:20220624T103702Z
UID:9694-1662681600-1662940799@staging.m4rd.org
SUMMARY:BBS UK Annual Conference 2022
DESCRIPTION:This highly-anticipated event provides the unique opportunity to learn about the latest research\, treatments\, and day to day management of BBS\, network with like-minded professionals and more importantly\, learn from those living with Bardet-Biedl syndrome. \nThe programme is still being finalised but will include:\n* Invaluable personal perspectives of living with BBS\n* An Update on Research and Understanding of BBS from Professor Phil Beales\n* The BBS Registry: Dr Elizabeth Forsythe\n* An update on behavioural research and health and wellbeing research in BBS from Dr Emma McGibbon and Dr Jane Waite\n* Guide Dogs UK: Overview of services \nIt is hoped to have the event CPD accredited and the cost is just £40 for professionals\, which includes refreshments and a luxury buffet lunch. \nFor more information please go to https://bbsuk.org.uk/news-events/bbs-uk-conference/ \nThe professionals booking form can be found here
URL:https://staging.m4rd.org/event/bbs-uk-annual-conference-2022/
LOCATION:Hilton Hotel\, Northampton\, 100 Watering Lane\, Collingtree\, NN4 0XW\, United Kingdom
CATEGORIES:Family Day,General Practice,Patient Information Day,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://staging.m4rd.org/wp-content/uploads/2022/06/Conference-Images-Collage.jpg
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220517
DTEND;VALUE=DATE:20220520
DTSTAMP:20260603T232232
CREATED:20220408T090704Z
LAST-MODIFIED:20220408T090704Z
UID:9276-1652745600-1653004799@staging.m4rd.org
SUMMARY:Online workshop: Understanding access and reimbursement
DESCRIPTION:Getting wider access to drugs for as many patients a possible is a clear priority in the drug development process\, especially for patient groups who are working to secure research into and treatments for their rare conditions.\nHowever\, understanding how to secure access to newly developed treatments is an often-neglected challenge. The processes involved in securing reimbursement can be intimidating to patient groups and act as a real barrier to engagement.  \nThis workshop will outline the basics of access and reimbursement: what it means\, when it happens\, and who is involved. It will also explore the key ways in which patient groups can contribute to the process and what should they be prepared for. Attendees will leave feeling more confident in what the access and reimbursement process involves and where they can add value. \nDay one: Access and reimbursement 101\, back to basics\nDay two: Understanding the NICE appraisal process\nDay three: where can patient groups get involved?
URL:https://staging.m4rd.org/event/online-workshop-understanding-access-and-reimbursement/
LOCATION:ONLINE
CATEGORIES:Patient Information Day,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/png:https://staging.m4rd.org/wp-content/uploads/2022/04/Asset-8-e1649337904516.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20200224T100000
DTEND;TZID=Europe/London:20200224T180000
DTSTAMP:20260603T232232
CREATED:20200121T180232Z
LAST-MODIFIED:20200121T180232Z
UID:6211-1582538400-1582567200@staging.m4rd.org
SUMMARY:Drug Repurposing for Rare Diseases 2020 Conference
DESCRIPTION:Findacure’s Drug Repurposing for Rare Diseases Conference is returning for its seventh consecutive year!\nFindacure’s 7th annual conference will showcase excellence in the development of repurposed drugs for rare disease patients\, highlight the potential for patient group-led innovation\, and emphasise repurposing as a valid business model for orphan drug development in industry. Held in celebration of Rare Disease Day\, our event will unite the rare disease community to share in groundbreaking drug repurposing projects that can bring real change to those living with rare diseases.
URL:https://staging.m4rd.org/event/drug-repurposing-for-rare-diseases-2020-conference/
LOCATION:America Square Conference Centre\, 17 America Square\, London\, EC3N 2LB\, United Kingdom
CATEGORIES:Conference,Networking,Patient Information Day,Rare Diseases
ATTACH;FMTTYPE=image/png:https://staging.m4rd.org/wp-content/uploads/2020/01/Picture1-e1579629397364.png
ORGANIZER;CN="Findacure":MAILTO:maryrose@findacure.org.uk
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20191011T133000
DTEND;TZID=Europe/London:20191011T163000
DTSTAMP:20260603T232232
CREATED:20191002T130612Z
LAST-MODIFIED:20191002T130612Z
UID:5861-1570800600-1570811400@staging.m4rd.org
SUMMARY:Rett UK Regional Professionals Day
DESCRIPTION:This is a fantastic opportunity to learn more about this rare and complex disorder in an informal session where you have lots of opportunities to ask questions.\nWith over 30 years’ experience\, Rett UK is the only UK charity providing professional family support services and training for anyone involved in supporting someone with Rett syndrome. \nAimed at SLTs\, OTs\, GPs and carers\, this is a free event where the Rett UK team get the opportunity to educate you on this rare neurological disorder\, to answer questions and to inform you of other future events they will be holding.
URL:https://staging.m4rd.org/event/rett-uk-regional-professionals-day/
LOCATION:THE HUB\, Easton Street\, High Wycombe\, Buckinghamshire\, HP11 1NJ\, United Kingdom
CATEGORIES:Networking,Patient Information Day,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://staging.m4rd.org/wp-content/uploads/2019/10/RETT-UK-LOGO.jpg
ORGANIZER;CN="Rett UK":MAILTO:keren.decoito@rettuk.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20190710T133000
DTEND;TZID=Europe/London:20190710T170000
DTSTAMP:20260603T232232
CREATED:20190529T195130Z
LAST-MODIFIED:20190606T210007Z
UID:5054-1562765400-1562778000@staging.m4rd.org
SUMMARY:BPSU Tea Party
DESCRIPTION:The British Paediatric Surveillance Unit invites you to this year’s event to enjoy afternoon tea and cakes\, hear young people speak about their experience of living with rare disease and visit informational stands.\nThe BPSU rare disease tea party will bring together stakeholders from across the rare disease community to hear young people and patient advocates speak about their experience of living with rare disease and working in the rare disease field. \nThis event is intended to be an informal networking opportunity with children and young people and carers\, healthcare professionals\, researchers and policy makers.
URL:https://staging.m4rd.org/event/bpsu-tea-party/
LOCATION:Royal College of Paediatrics and Child Health\, 5-11 Theobalds Road\, London\, WC1X 8SH\, United Kingdom
CATEGORIES:Child and Young Person,Family Day,Networking,paediatric,Patient Information Day,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://staging.m4rd.org/wp-content/uploads/2019/05/unnamed-2-e1559854793637.jpg
ORGANIZER;CN="BPSU":MAILTO:enquiries@rcpch.ac.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190228
DTEND;VALUE=DATE:20190301
DTSTAMP:20260603T232232
CREATED:20190126T110741Z
LAST-MODIFIED:20200123T153111Z
UID:4219-1551312000-1551398399@staging.m4rd.org
SUMMARY:Rare Disease Day 2019
DESCRIPTION:28 February 2019 will be the twelfth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities.\n \nMedics 4 Rare Diseases would love to know how you’re raising awareness on Rare Disease day. Tell us in the comments below or Tweet using @M4RareDiseases and #RareDiseaseDay.
URL:https://staging.m4rd.org/event/rare-disease-day-2019-2/
CATEGORIES:Patient Information Day
ATTACH;FMTTYPE=image/jpeg:https://staging.m4rd.org/wp-content/uploads/2019/01/Twitter-banner.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190119T093000
DTEND;TZID=UTC:20190119T160000
DTSTAMP:20260603T232232
CREATED:20181119T095405Z
LAST-MODIFIED:20200122T122036Z
UID:3371-1547890200-1547913600@staging.m4rd.org
SUMMARY:Information Day On Fibromuscular Dysplasia (FMD)
DESCRIPTION:Fibromuscular Dysplasia (FMD) is evolving from a rare disease of renal arteries accounting for a minority of cases of secondary hypertension in young women\, to a ‘systemic’ vascular disease which can also affect cervico-cephalic\, coronary\, and iliac arteries.\nThis patient information day will aim to explain what FMD is\, challenge previous misconceptions about FMD and highlight the latest work being undertaken by registries and research. \nCome and hear from expert international guest speakers such as Prof Alexandre Persu (lead for European FMD registry) and Prof David Adlam (UK expert in spontaneous coronary artery dissection (SCAD))\, as well as celebrity chef and FMD/ SCAD sufferer\, Sally Bee. This day will be of interest to clinicians\, patients and carers alike. Any further information\, contact tina.chrysochou@srft.nhs.uk or @FmdsUk \nPatients with FMD in any arterial bed can be uploaded to FMD RADAR. \nPlease refer to the Agenda for further information.
URL:https://staging.m4rd.org/event/information-day-on-fibromuscular-dysplasia/
CATEGORIES:Conference,Patient Information Day
ATTACH;FMTTYPE=image/jpeg:https://staging.m4rd.org/wp-content/uploads/2018/10/Information-Day-On-Fibromuscular-Dysplasia.jpg
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