BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Medics For Rare Disease - ECPv6.15.20//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:Medics For Rare Disease
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: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
BEGIN:DAYLIGHT
TZOFFSETFROM:+0000
TZOFFSETTO:+0100
TZNAME:BST
DTSTART:20240331T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0100
TZOFFSETTO:+0000
TZNAME:GMT
DTSTART:20241027T010000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230906T140000
DTEND;TZID=Europe/London:20230906T160000
DTSTAMP:20260410T203821
CREATED:20230825T093051Z
LAST-MODIFIED:20230825T093330Z
UID:11221-1694008800-1694016000@www.m4rd.org
SUMMARY:Living with Uncertainty & Impact of Trauma Mental Wellbeing Webinar
DESCRIPTION:People affected by a rare and undiagnosed condition live with an accumulative impact on their mental wellbeing. Specifically at an individual level\, people living with a rare disease (PLWRD) can have an associated mental health co-morbidity\, and at a population level\, the community live with the increased psychological impact associated with the rare disease journey across all stages of life. Furthermore\, the rare disease community has increased exposure to social inequality and discrimination\, which are risk factors affecting poor mental wellbeing. The rare disease community has identified the need to look beyond the physiological symptoms of a rare condition\, and recognise the importance of psychological support as a fully integrated part of the coordination of care. Without support\, there will continue to be a detrimental impact on the mental health of those affected by rare conditions\, hindering them from effective participation in society. \nThis webinar will begin by breaking down the biopsychosocial continuum and addressing the intersectional needs of our community. It will then move on to a panel discussion on living with uncertainty and the impact of trauma\, ending with a discussion on the impact of living with congential malformations. \nThe outcome of the webinar will be the launch of a public call for expressions of interest to join the new EURORDIS Mental Wellbeing Partnership Network\, where patient representatives will partner with experts to identify common mental health needs and inform EURORDIS’ strategic and policy action.
URL:https://www.m4rd.org/event/living-with-uncertainty-impact-of-trauma-mental-wellbeing-webinar/
LOCATION:ONLINE
CATEGORIES:Conference,Webinar
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/08/Screenshot-2023-08-25-at-10.29.59.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230926T093000
DTEND;TZID=Europe/London:20230926T160000
DTSTAMP:20260410T203821
CREATED:20230713T090812Z
LAST-MODIFIED:20230713T091949Z
UID:11109-1695720600-1695744000@www.m4rd.org
SUMMARY:Breaking Down Barriers
DESCRIPTION:This is the first opportunity for the BDB network to get together in person since lockdown! \n\n 26th September 2023 – London\n\nRegistration will be from 9:45 am\nStart 10:00am\nFinish 4:00pm\nLunch will be provided.\nOur focus is on bringing the network together\, strengthening ties and finding opportunities for collaboration. \nOur keynote speakers (to be announced soon) will introduce key changes in the world of genetic services\, testing and research. \nThe workshops are: \n\nEngaging Excluded Communities.\nWorking together on Patient and Public Involvement and learning from people with lived experience.\nSeizing new opportunities in the genetics field\n\nYou will have an opportunity to explore two of the above. \nThe afternoon will include space for us to explore up to three hot topics or challenges. These will be identified by members in attendance. \nThe workshop will identify challenges for individual member organisations and shared challenges across the network.  We will discuss possible solutions\, ways to collaborate and explore how BDB can support you and your work. \nYou can send up to two members of your team to the event but if you would like more people to attend then please get in touch and we can add you to a waiting list. If there are practical challenges to your participation\, please do give us a call to discuss them. We will do our best to make the events as accessible to the whole membership as possible. Get in touch with Catherine by email catherine.lewis@alstrom.org.uk to reserve your place today.
URL:https://www.m4rd.org/event/breaking-down-barriers/
LOCATION:London
CATEGORIES:Conference
ATTACH;FMTTYPE=image/png:https://www.m4rd.org/wp-content/uploads/2023/07/Screenshot-2023-07-13-at-09.59.38.png
END:VEVENT
END:VCALENDAR