BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Medics For Rare Disease - ECPv6.15.20//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-ORIGINAL-URL:https://www.m4rd.org
X-WR-CALDESC:Events for Medics For Rare Disease
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:Europe/London
BEGIN:DAYLIGHT
TZOFFSETFROM:+0000
TZOFFSETTO:+0100
TZNAME:BST
DTSTART:20210328T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0100
TZOFFSETTO:+0000
TZNAME:GMT
DTSTART:20211031T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0000
TZOFFSETTO:+0100
TZNAME:BST
DTSTART:20220327T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0100
TZOFFSETTO:+0000
TZNAME:GMT
DTSTART:20221030T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0000
TZOFFSETTO:+0100
TZNAME:BST
DTSTART:20230326T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0100
TZOFFSETTO:+0000
TZNAME:GMT
DTSTART:20231029T010000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220608T140000
DTEND;TZID=Europe/London:20220608T153000
DTSTAMP:20260423T172857
CREATED:20220524T133648Z
LAST-MODIFIED:20220524T133648Z
UID:9518-1654696800-1654702200@www.m4rd.org
SUMMARY:Understanding Rare Disease: Communicating with Patients
DESCRIPTION:Sign up to learn about the role of communication in rare disease from those affected directly\, in an interactive FREE virtual event!\nAbout this event\nThe event will kick off with a session from our guest speaker\, who will explore the value of effective and sensitive communication skills when it comes to handling complex conditions\, such as rare disease. Attendees will then have the chance to speak directly with some of the I am Number 17 campaign changemakers and hear first-hand about how their diagnostic odysseys came to an end\, through perseverance and working together with the help of their HCP/Consultants. \nWhat will you get from attending this event?\n• Gain experience from communicating directly with those affected by rare disease \n• Improve your understanding of rare disease and how to react when faced with a potential rare disease \n• Develop your communication skills (notability how to share sensitive information and break bad news) \n• Gain a certificate of attendance to exhibit your enhanced learning \nWe hope that learning from real-life examples will provide you with tangible learnings to take along your medical careers and ultimately equip you to Find the 1 in 17 in the future… \nAll medical students are welcome to attend the event! \nPlease note this event may be beneficial for students preparing for upcoming OSCE examinations. \nWe look forward to seeing you there and learning together! \nThis event is initiated and funded by Takeda UK\, run together with Medics4RareDisease.
URL:https://www.m4rd.org/event/understanding-rare-disease-communicating-with-patients/
LOCATION:Cheshire
CATEGORIES:Medical Students,Rare Diseases,Webinar,workshop
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2022/05/https-cdn.evbuc_.com-images-283451039-908956374363-1-original.20220512-111502.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20220613T173000
DTEND;TZID=Europe/London:20220613T183000
DTSTAMP:20260423T172857
CREATED:20220504T084323Z
LAST-MODIFIED:20220504T084323Z
UID:9302-1655141400-1655145000@www.m4rd.org
SUMMARY:The genetics of intellectual disability: Episode 15
DESCRIPTION:This webinar is part of the popular Genetics of webinar series and will provide an interesting update on the genetic origins of intellectual disability\, as well as explore what challenges remain in this area. \nOur speakers will explore what research is required after a genetic diagnosis of intellectual disability and what families would value the most from the diagnostic experience. This webinar is also a special chance to discuss what the experience of receiving a genetic diagnosis is like for patients and their families. \nDuring this webinar you will: \n\nUnderstand what we do know about the genetic origin of intellectual disabilities\nAppreciate the challenges and opportunities in research in this field\nRecognise how post-diagnostic research is important in order to understand the different ways people experience intellectual disability\nValue the insights gained from those who have received a genetic diagnosis of intellectual disability \n\nThis meeting is in association with the RSM Intellectual Disability Section. \nThe genetics of… series has been developed following feedback from delegates. Presented by the Medical Genetics section of the Royal Society of Medicine\, this series of talks will focus on the role of genetics in different areas of health and wellbeing.
URL:https://www.m4rd.org/event/the-genetics-of-intellectual-disability-episode-15/
LOCATION:LIVE STREAM
CATEGORIES:Genetics,Rare Diseases,Royal Society of Medicine,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2022/05/Screenshot-2022-05-04-at-09.38.35.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220617
DTEND;VALUE=DATE:20220618
DTSTAMP:20260423T172857
CREATED:20220406T083528Z
LAST-MODIFIED:20220406T083528Z
UID:9258-1655424000-1655510399@www.m4rd.org
SUMMARY:Hypermobility syndrome: A practical guide to assessment\, management and care
DESCRIPTION:Join the RSM at this multidisciplinary event which will provide a valuable overview and a broader understanding of hypermobility syndrome and the care of these patients. \nExperts in their field will present a series of talks that will inform delegates about practical guides for the assessment and management of this condition and will explore how community care can make a difference. \nKey speakers include: Professor Lara Bloom\, Academic Affiliate Professor of Practice in Patient Engagement and Global Collaboration\, Penn State College of Medicine and CEO of The Ehlers-Danlos Society\, Dr James Kustow\, Consultant Psychiatrist and Medical Director\, The Groves\, Dr Jane Simmonds\, Co-deputy Director of Education and MSc Advanced Paediatric Physiotherapist\, and many more. \n  \nBook in-person event here \nBook live stream here
URL:https://www.m4rd.org/event/hypermobility-syndrome-a-practical-guide-to-assessment-management-and-care/
LOCATION:Royal Society of Medicine\, 1 Wimpole Street\, London\, W1G 0AE\, United Kingdom
CATEGORIES:Rare Diseases,Royal Society of Medicine
ATTACH;FMTTYPE=image/jpeg:https://www.m4rd.org/wp-content/uploads/2022/04/unnamed-25.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220627
DTEND;VALUE=DATE:20220702
DTSTAMP:20260423T172857
CREATED:20220315T114405Z
LAST-MODIFIED:20220315T114405Z
UID:9161-1656288000-1656719999@www.m4rd.org
SUMMARY:11th European Conference on Rare Disease & Orphan Products (ECRD)
DESCRIPTION:The European Conference on Rare Diseases & Orphan Products (ECRD) is recognised globally as the largest\, patient-led rare disease event in which collaborative dialogue\, learning and conversation takes place\, forming the groundwork to shape goal-driven rare disease policies and allow for important and innovative discussions on a national and an international level to take place. \nECRD 2022 will take place online on 27 June -1 July. \nLeading\, inspiring and engaging all stakeholders to take action\, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with over 1500 stakeholders in the rare disease community – patient advocates\, policy makers\, researchers\, clinicians\, healthcare professionals\, healthcare industry representatives\, academics\, payers\, regulators and Member State representatives. \nThis 11th edition follows a pivotal two-year Rare 2030 Foresight Study\, supported by the European Parliament and European Commission\, that guided a large-scale and multi-stakeholder reflection on rare disease policy in Europe through 2030. \nThe concluding recommendation of Rare2030 was the need for a new European policy framework on rare diseases with measurable and actionable goals. Current actions at Member State level alone\, or legislative changes in specific areas are not enough. We need a new European collective strategy for rare diseases to bring Member States’ commitment to rare diseases under a common umbrella and mark a step forward in the post-COVID world. \nThis ECRD will be a critical opportunity for all stakeholders to consider how to transform this exhaustive review of the strategy on rare diseases into a proposal of concrete actions ultimately creating the ecosystem required to address the unmet needs and persisting inequalities across Europe.
URL:https://www.m4rd.org/event/11th-european-conference-on-rare-disease-orphan-products-ecrd/
LOCATION:ONLINE
CATEGORIES:Conference,Lectures,Networking,Rare Diseases
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2022/03/Word-Cloud_What-does-ECRD-mean-to-you.png
END:VEVENT
END:VCALENDAR