Moviebox pro APK 2021 Minecraft PE APK
Loading Events

« All Events

  • This event has passed.

Online workshop | Representing your community: engaging with ethnic minority communities

12th January - 14th January

[image description: a photo of two women standing next to a banner stand which advertising the Breaking Down Barriers project]

Findacure is delighted to announce its next online workshop, which will guide patient groups through improving engagement with ethnic minority groups to better represent and serve their respective rare disease communities. 


Hosted in collaboration with Breaking Down Barriers, our first event of 2021 will delve into three key topics;  exploring diverse experiences in the rare disease community, improving outreach and engagement efforts, and putting theory into practice.

The workshop will take place across three 2-hour interactive sessions. Attendees will gain the most benefit by attending all three days of the workshop, however you can also sign up for each session independently.

As spaces are limited, we politely request that only one member from each organisation registers to attend.

11:00am - 1:00pm, Tuesday 12th January

Day one of our workshop will focus on understanding the range of experiences that individuals may have within the rare community and how these may differ from our own. There will be a particular focus on understanding how to frame discussions around diversity and ethnicity and being able to address your own preconceptions around the subject.

What will be covered?

– The use of language when discussing diversity, race and ethnicity
– Challenging your own assumptions
– Why is diversity important in rare communities and patient organisations
– Personal experiences of the rare community as a member of an ethnic minority

11:00am - 1:00pm, Wednesday 13th January

Day two of the workshop will focus upon how patient organisations can begin to identify patients in diverse communities that could benefit from support and being part of the community. With a particular focus upon how to adapt outreach to different groups and individuals, and how to take practical steps to engage and communicate effectively.

What will be covered?

 The experience of a senior Muslim chaplain
 The experience of a volunteer chaplain
– Social prescribing and diverse rare communities
 Top tips for communication and engagement


11:00am - 1:00pm, Thursday 14th January

Day three will focus upon hearing the experiences of rare patient organisations as they put the theory into practice.

What will be covered?

 The use of social media to engage diverse communities by the Cystic Fibrosis Trust
 Bardet Biedl UK’s experience working with Breaking Down Barriers
– The importance of providing culturally competent services.                                                                                                                                    – The Sickle Cell and Young Stroke Society (SCYSS) experience with engaging families for the Family Resilience Programme.

The workshop will be hosted on Zoom and joining details will be sent to attendees upon registration. When registering, please ensure you select a ticket for each session you wish to attend. 

Findacure would like to thank The National Lottery Community Fund for providing funding for The Empowerment Programme.


Philippa Norman