EDIRA™ Equality, Diversity and Inclusive Research Association was developed to address the issue of including diverse rare disease communities in research and service development.
RareQoL has gained ethical approval from the University of Chester England, to advance our EDIRA project. The research study asks the question ‘Why is inclusive research important’?
Inclusive research is said to empower participants and produce authentic knowledge, gained from lived experience.
It is important for our diverse rare disease communities to have a voice in research and service development as we face unique and different challenges. Inclusive research practices will enable diverse rare disease communities to become participants with a
voice which enables us to become the agents of our own transformation and influence the provision of rare disease services and therapy we receive.
Whose Voice is it anyway?
Diverse rare disease communities have often been objects of investigation, rather than participants in the design and process of research that impacts our lives.
EDIRA Conference 2023
On the 12th of May 2023, we will be hosting our first EDIRA Conference in Cardiff, Wales. Please check out an article by Dr Sondra Butterworth in Rare Revolution: Issue 025 Page 72.
More details can be found on our website www.rareqol.co.uk.
Sponsor our EDIRA Project
We need your help!
We have limited funding for our work.Our EDIRA project has the potential to change the lives of diverse communities living with rare diseases and long-term conditions.