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DTSTART;VALUE=DATE:20250522
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SUMMARY:"Reaching Beyond Rare: Strengthening Mental Health and Wellbeing in Rare Disease Advocacy" Satellite Workshop to EURORDIS Membership Meeting
DESCRIPTION:On 22 May 2025 in Riga\, EURORDIS and Rareminds will host a peer training workshop titled “Reaching Beyond Rare: Strengthening Mental Health and Wellbeing in Rare Disease Advocacy”\, aligning with this year’s European Mental Health Week theme: Care for mental health\, invest in social rights.\nPeople with rare and undiagnosed conditions often experience stigma\, isolation\, and unequal access to mental health support—issues deeply rooted in broader social and structural inequalities. This workshop recognises that promoting mental health also means addressing these social determinants and empowering communities through peer-led support and inclusion. \nThe event will launch the EURORDIS Mental Health Toolkit – Reaching Beyond Rare\, which offers practical strategies to strengthen mental wellbeing across rare disease communities. Through interactive breakout sessions\, participants will explore ways to build resilience\, enhance peer support\, and foster self-awareness. \nA key focus will be on understanding the effects of social exclusion and gathering good practices that promote participation in society and independent living. These collective insights will help inform future advocacy efforts and support policy recommendations that prioritise mental health and social rights for all.
URL:https://www.mentalhealtheurope.org/emhw-event/reaching-beyond-rare-strengthening-mental-health-and-wellbeing-in-rare-disease-advocacy-satellite-workshop-to-eurordis-membership-meeting/
CATEGORIES:Member Event
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DTSTART;TZID=Europe/Paris:20240515T140000
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SUMMARY:No Health without Mental Health! Let’s Co-create a Mental Health and Wellbeing Toolkit.
DESCRIPTION:HYBRID \nThe rare disease community has highlighted the lack of holistic support from medical services\, where their physical health needs are met but not their psychological and emotional needs. The United Nations recognises this and calls for effective programmes\, promoting mental health and psychosocial support\, to be implemented through enhanced psychologically informed medical care. \nThis session will start a co-creation process to develop a new Mentally Healthy Toolkit for the rare disease community\, by exploring the existing approaches and tools\, that have worked in the rare disease community\, to drawn on these tools form the basis for a new Toolkit. As well as providing concrete policy solutions that can support the implementation of the UN commitment into national healthcare systems. \nThe Mental Health Session\, that takes place as part of EURORDIS’ European Conference for Rare Diseases\, will draw on and explore existing psychosocial approaches and tools to test their applicability\, transferability and scalability for other rare conditions and communities. \nAt the close of this session\, participants are expected to be able to: \n– Build the awareness and understanding of the impact of rare diseases on mental health and on the risk and protection factors that influence our mental health and wellbeing. \n– Leverage the insights gained from existing psychosocial approaches and tools to alleviate mental health challenges associated with rare conditions for both the individual and the family\, to include in EURORDIS’ Mentally Healthy Community Toolkit. \n– Identify recommendations to policy makers and the new European Parliament to develop psychologically informed medical care\, that support the UN’s call for Mental States to establish psychosocial support for PLWRD and their families. \nRegistration can be made via the following link: \nRegister
URL:https://www.mentalhealtheurope.org/emhw-event/eurordis-no-health-without-mental-health/
CATEGORIES:Member Event
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