RareChat is a chance to chat informally to other patient group leaders and advocates in the rare disease community. Each session will have a theme suggested by our community and a Findacure team member to chair the discussion.

The aim is simple - to provide you with a chance to stay connected with the wider rare disease community and share experiences and ideas.

For any questions, please contact projects@findacure.org.uk.

Patient group experiences of using data

Wednesday 26th May, 10am - 11:30am

Data is at the centre of what patient groups do; it helps them to better understand their communities, build projects and services, demonstrate impact and drive research. It can be used in so many different ways that often the topic itself can be overwhelming and confusing. Yet when properly utilised it can help patient groups be more efficient in their practices and more understanding of their communities.

Join this RareChat to discuss:

• How you use data in your patient group
• Any concerns you have over data collection
• How you use data to inform the building of your products and services