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X-WR-CALDESC:Events for Medics For Rare Disease
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DTSTART;TZID=Europe/London:20251027T150000
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DTSTAMP:20260508T140833
CREATED:20251008T142605Z
LAST-MODIFIED:20251008T142605Z
UID:13725-1761577200-1761580800@www.m4rd.org
SUMMARY:Rare Disease Day 2026: Launch Webinar
DESCRIPTION:Join one of two upcoming webinars on either the 27 or 28  October for a first look at Rare Disease Day 2026! Learn more about the resources which have been created and everything that is available for download to use in your campaign. This webinar is for patient advocates\, patient organisations\, industry supporters and all stakeholders in the rare disease community.
URL:https://www.m4rd.org/event/rare-disease-day-2026-launch-webinar/
LOCATION:ONLINE
CATEGORIES:Patient advocacy,Rare Diseases,Webinar
ATTACH;FMTTYPE=image/webp:https://www.m4rd.org/wp-content/uploads/2025/10/RDD-2026-Launch-Webinar.webp
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20230228
DTEND;VALUE=DATE:20230301
DTSTAMP:20260508T140833
CREATED:20220916T110923Z
LAST-MODIFIED:20220930T084052Z
UID:9963-1677542400-1677628799@www.m4rd.org
SUMMARY:BPSU Annual Symposium
DESCRIPTION:The BPSU is currently planning to hold its yearly Symposium on rare diseases on 18th October 2022 and are in the process of compiling an agenda for the day\, which will take place at the RCPCH council chambers on 13th October 2022. \nJoin the BPSU\, NHS clinicians\, and patient groups for what is looking to be an informative event which will acknowledge the current work conducted on rare diseases in children and raising awareness of such. \nFor more information email Charlotte Lewis
URL:https://www.m4rd.org/event/bpsu-annual-symposium/
LOCATION:RCPCH Council Chambers\, 5-11 Theobald's Road\, London\, WC1X 8SH\, United Kingdom
CATEGORIES:BPSU,Conference,Networking,Patient advocacy
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2019/05/bpsu_rare_disease_day_event_-_for_30_year_report-e1559159584897.jpg
ORGANIZER;CN="BPSU":MAILTO:enquiries@rcpch.ac.uk
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221126
DTEND;VALUE=DATE:20221127
DTSTAMP:20260508T140833
CREATED:20220609T093342Z
LAST-MODIFIED:20220609T093342Z
UID:9581-1669420800-1669507199@www.m4rd.org
SUMMARY:RAREfest22: Educate\, Engage\, Empower
DESCRIPTION:FREE to attend\, RAREfest22 is a public-facing\, rare disease inspired festival featuring interactive talks\, demos and exhibits\, film and art showcasing ground-breaking science\, visionary technology and pioneering organisations improving lives and bringing hope to those living with rare conditions.\nAn award-winning festival that is as UNIQUE as the patients it champions. Featuring the brightest minds in rare disease research\, the innovators of life-changing tech\, the pioneers in rare disease medicine\, and the patients whose powerful voices must be heard. For the experts. For the curious. For everyone. For FREE. \nCambridge Rare Disease Network is a platform for change. It is the infrastructure that unites patients\, advocates\, experts and leaders to address the challenges faced by people affected by rare diseases. By sharing knowledge and experience\, and working together\, the journey toward s better diagnosis\, treatment and support for patients and their families is smoother and more certain. \nBook now
URL:https://www.m4rd.org/event/rarefest22-educate-engage-empower/
LOCATION:The Guildhall\, Market Square\, Cambridge\, CB2 3QB
CATEGORIES:exhibition,Festival,Genetics,Genomics,Networking,Patient advocacy,Rare Diseases
ATTACH;FMTTYPE=image/webp:https://www.m4rd.org/wp-content/uploads/2022/06/https-cdn.evbuc_.com-images-286969269-134598541307-1-original.20220518-133206.webp
ORGANIZER;CN="CRDN":MAILTO:jo@camraredisease.org
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BEGIN:VEVENT
DTSTART;TZID=Europe/London:20221029T130000
DTEND;TZID=Europe/London:20221029T160000
DTSTAMP:20260508T140833
CREATED:20221004T085820Z
LAST-MODIFIED:20221004T085820Z
UID:10125-1667048400-1667059200@www.m4rd.org
SUMMARY:Patient partnerships: Improving healthcare equality from pandemic to endemic
DESCRIPTION:The purpose of this event is to promote partnerships between patients and the medical profession to pave the way for a better\, more inclusive healthcare system as we rebuild after the pandemic. By strengthening this relationship\, we aim to ensure patients never feel isolated when they are at their most vulnerable. We will discuss real-life examples of partnerships and their successes.\nThere will be a series of presentations and workshops by students and experienced professionals on non-technical aspects of medical practice\, such as political challenges with the public health service and humanitarian values. The event will end with a prize-giving ceremony for the Dr Edwin Doubleday essay award\, which funds medical students aspiring to improve the relationship between patients and the medical profession. \nAims of the event: \n\nTo highlight the role and importance of patient partnerships\nTo educate the medics of tomorrow about non-technical aspects of practice\nTo inspire attendees to improve the relationship between patients and the medical profession\nTo give attendees the chance to improve their presentation and networking skills\n\nThis event is run in association with the University of Manchester Doubleday Centre and the Doubleday Medical Schools Patient Partnership Collaboration. \nStudents are invited to submit an essay using this link below to enter the Doubleday Student Prize.
URL:https://www.m4rd.org/event/patient-partnerships-improving-healthcare-equality-from-pandemic-to-endemic/
LOCATION:LIVE STREAM
CATEGORIES:Medical Students,Patient advocacy,Royal Society of Medicine,workshop
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2022/10/GROUP_ON_DOT.png
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DTSTART;TZID=Europe/London:20211214T110000
DTEND;TZID=Europe/London:20211214T123000
DTSTAMP:20260508T140833
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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