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X-WR-CALNAME:Medics For Rare Disease
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X-WR-CALDESC:Events for Medics For Rare Disease
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DTSTART;TZID=Europe/London:20260313T093000
DTEND;TZID=Europe/London:20260313T160000
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LAST-MODIFIED:20260306T092156Z
UID:14885-1773394200-1773417600@www.m4rd.org
SUMMARY:Rare Disease\, NF1 and Primary Care: Research Workshop
DESCRIPTION:Building collaborations to advance rare disease research in primary care \nAre you a primary care academic\, clinician with an interest in rare diseases\, rare-disease researcher\, or an industry partner curious about the future of primary care research in rare conditions? \nIf so\, this interactive research development workshop is for you. \nThis NW RDN NIHR-funded workshop will bring together stakeholders from across primary care\, secondary care\, academia\, patient-focused research\, and industry to explore how primary care can better support people living with rare diseases\, using neurofibromatosis type 1 (NF1) as an exemplar condition. \nThe session will explore:\n* the role of primary care in early recognition and diagnosis\n* diagnostic pathways and longitudinal management\n* coordination across services\n* opportunities to use routinely collected data and digital health tools to strengthen care \nBy identifying key evidence gaps and priority research questions\, the workshop aims to develop a collaborative\, patient-centred research agenda grounded in everyday primary-care practice. \nJoin us to connect\, set research priorities\, and shape collaborative studies that improve outcomes for people living with rare diseases.
URL:https://www.m4rd.org/event/rare-disease-nf1-and-primary-care-research-workshop/
LOCATION:Engine Rooms\, Birchwood Park\, Warrington\, Cheshire\, WA36 YNI
CATEGORIES:clinical,General Practice,HCPs,Lunch & learn,Public health,Rare Diseases,Research,workshop
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/03/Screenshot-2026-03-06-at-09.18.32.png
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20260226T140000
DTEND;TZID=Europe/London:20260226T153000
DTSTAMP:20260521T205217
CREATED:20260206T101350Z
LAST-MODIFIED:20260206T101350Z
UID:14789-1772114400-1772119800@www.m4rd.org
SUMMARY:When to Suspect a Rare Disease in Any Practice Setting
DESCRIPTION:Join Medscape for a live educational session\, ‘When to Suspect a Rare Disease in Any Practice Setting’\, featuring our very own CEO Lucy McKay.  \nThis live-streamed event will take place on February 26\, 2026\, at 2 PM GMT / 3 PM CET and will explore practical insights to help clinicians recognize when a rare disease may be at play across diverse clinical settings.  \nThe event will be hosted live on Medscape’s social media platforms—no registration is required. Simply follow @Medscape to watch once the event goes live.
URL:https://www.m4rd.org/event/when-to-suspect-a-rare-disease-in-any-practice-setting/
LOCATION:LIVE STREAM
CATEGORIES:clinical,General Practice,Global Health,HCPs,Lectures,Medical Students,Public Engagement,Public health,Rare Disease
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2026/02/ME0152025_SocialAd-1.png
ORGANIZER;CN="Medscape Education Global":MAILTO:aduncan@webmd.net
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220909
DTEND;VALUE=DATE:20220912
DTSTAMP:20260521T205217
CREATED:20220624T103702Z
LAST-MODIFIED:20220624T103702Z
UID:9694-1662681600-1662940799@www.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://www.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://www.m4rd.org/wp-content/uploads/2022/06/Conference-Images-Collage.jpg
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20211130T190000
DTEND;TZID=Europe/London:20211130T203000
DTSTAMP:20260521T205217
CREATED:20211014T080745Z
LAST-MODIFIED:20211014T080851Z
UID:8488-1638298800-1638304200@www.m4rd.org
SUMMARY:Top tips for managing rare disease in GP
DESCRIPTION:The RCGP Northern Ireland Faculty is delighted to be collaborating with the Northern Ireland Rare Disease Partnership (NIRDP) to host a ‘Top Tips for Managing Rare Disease in GP’ evening. Topics provided aim to help you manage patients with rare disease.\nThe event is hosted by the RCGP Northern Ireland and some aspects may be NI focused\, but we welcome GPs from any nation to join if interested. \nSpeakers include: \n\nDr Caoimhe McKenna\, Clinical Genetic Registrar\nDr Genevieve Allum\, GP\nDr Lucy McKay\, CEO M4RD\nProf AJ McKnighht\, Queens University\, Belfast\n\nFor any queries or further information please contact Fiona Monaghan fiona.monaghan@rcgp.org.uk 
URL:https://www.m4rd.org/event/top-tips-for-managing-rare-disease-in-gp/
LOCATION:ONLINE
CATEGORIES:clinical,General Practice,Rare Diseases
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2021/10/FBfIgNeXoAQmPnI.jpeg
ORGANIZER;CN="Northern Ireland Rare Disease Partnership (NIRDP)":MAILTO:info@nirdp.org.uk
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