EDIRA Conference 2023 12 October 2022|EDIRA Conference ‘Why is inclusive research important’? EDIRA™ Equality, Diversity and Inclusive Research Association was developed to address the issue of including diverse rare disease communities in research and service development. Inclusive research is said to empower participants and produce authentic knowledge, gained from lived experience. It is important for our diverse […]
The Lived experience!! The person diagnosed with a rare condition, provides a unique ‘insider perspective’, gained from a unique lived experience. The physical, psychological, and social effects is often further impacted by the wider intersecting experiences of economic, ethnic, and political challenges. Like the author, Dr Sondra Butterworth, there are researchers, with lived experience, who have developed […]
‘Why is inclusive research important’? EDIRA™ Equality, Diversity and Inclusive Research Association was developed to address the issue of including diverse rare disease communities in research and service development. Ethical Approval. 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 […]
We spoke to Alan Thomas, founder of Ataxia and me, a charity who aims to raise awareness of Ataxia in Wales, the UK and around the world. He shares his experience of his own diagnosis, the information available and difficulties around accessing medical specialists. Alan advises the importance of a support network and how the wider […]
As you know, episode one of our Inside Outside, Making The Invisible Visible podcast is now live. Over the next few weeks, we’ll be taking a deeper look into the reflections, stories and key messages discussed by our co-hosts Sondra Butterworth and Dr Shanali Perera. In this blog, we’re focusing on the patient journey and […]
UK Rare Disease Framework was published January 2021. One of the key underpinning themes is: The Patient voice. The Framework says: Patients, their families, carers, and the organisations that represent them live with the realities of a rare disease every day. They have a great amount of knowledge and lived experiences to share which can be hugely valuable […]