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Supporting your community: mental health and wellbeing

Towards the end of March 2021, we hosted a three-day online workshop which focused on mental health and wellbeing within the rare disease community. The goal of the workshop was to provide patient organisations with an in-depth understanding of mental health and give them the tools to recognise and cope with different mental health situations or challenges that could arise.

We know that living with a rare disease can have a huge impact on every aspect of life, however, physical health is often prioritised over mental wellbeing. Now more than ever, it is vital that our mental health and the mental health of those around us is being looked after. We know that patient organisations are at the heart of providing support for their rare disease community. This workshop provided guidance and practical advice to enable them to better support the positive mental health of those they interact with. Over the course of the three days we took the time to highlight already existing resources that are available to help patient groups. We also invited speakers from the rare disease and healthcare community to discuss their mental health projects to provide ideas and inspiration.

We broke the topic down into three two-hour long sessions, day one ‘Awareness, resources and safeguarding’ introduced mental health and looked at the impact having a rare condition can have on mental wellbeing. Day two ‘providing services to support mental health and wellbeing’ saw speakers from patient organisations explore and analyse mental health projects they have undertaken. On the third and final day of the workshop we looked at ‘supporting your community through serious illness’ where we discussed grief and bereavement and provided advice and guidance on how to handle difficult conversations and situations.