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Representing your community, engaging with ethnic minority communities

In January 2021 we hosted a three day online workshop in collaboration with Breaking Down Barriers that focused on how patient groups can improve their engagement with ethnic minority groups to better serve their rare communities. The goal of the workshop was to give attendees some tangible strategies to improve their engagement and outreach to feel more confident in expanding their community. Having a rare disease is often a very isolating experience and can be even more so for those belonging to marginalized communities, therefore we felt this workshop was a way for us to begin to address how patient groups can help to relieve this isolation and support those who may never have been engaged previously.


Day one had a focus upon setting up the context for the whole workshop, with the aim of promoting understanding of how to approach the topic of diversity and engagement to aid upcoming discussions. The day saw discussions on the correct use of language in discussions and how this has changed over the years, introspection on our own assumptions and a presentation on the idea of privilege and how we can use it as a lens to understand the challenges others face. We were given some context on why diversity is important in rare communities and patient organisations and why patient organisations should be actively engaging and trying to make their communities and organisations more diverse. The day was rounded off by hearing the perspectives of individuals who are from minority backgrounds and also live with or in close proximity to rare disease in order to show attendees some examples of real experiences.

Day two was focused on how patient groups can go about improving their outreach and engagement efforts and how they can find an approach that fits their community and capacity as an organisation. We heard from Muslim chaplain, Romana Kazmi and Jewish chaplain Michele Massing as they put forward expertise on how different individuals from different cultures may process a diagnosis or genetic information and how they can best be reached based upon this. We were then joined by Sondra Butterworth, an expert in social prescribing who touched on how utilizing social prescribing can help patient organisations to appeal to different sectors of their communities. Asya Choudry from Breaking Down Barriers then took us through her top tips for communication and engagement. The day was rounded off by breakout sessions in which all attendees were put into groups to discuss how engagement could be improved throughout different working practices including recruitment, events, communications and websites, and the production of culturally competent workplaces.

The final day of the workshop was focused upon showcasing examples of organisations that have put projects to increase engagement and outreach into practice and the lessons they have learned. We saw case studies from the Cystic Fibrosis Trust, Bardet Biedl Syndrome UK and Sickle Cell Young Stroke Survivors alongside a talk on providing culturally competent services by Dr Parveen Ali from the University of Sheffield.