RareQoL Founder Dr Sondra Butterworth, a Community Health Psychologist, developed EDIRA: Equality Diversity and Inclusive Research Association project. The EDIRA Project is Co-Chaired by Associate Professor Dr Andrew Mitchell at the University of Chester, who provided ethical approval for the EDIRA pilot study and conference. The project has provided important learning from the research, community […]
Traditionally, research was based upon two paradigms, which included quantitative and qualitative methodologies. Quantitative research is usually objective in design, with a focus on deductive logic in the research procedure. For example, the clinical researcher, designing a study, may adopt an approach that is purely quantitative in nature. The research participant under investigation, may be seen from a […]
The Power of Narrative-Based Medicine Stories have been an integral part of human communication for centuries. From childhood bedtime tales to memoirs that capture our imagination, stories have a unique and powerful way of captivating and connecting us. In the realm of healthcare, stories hold a similar power through narrative-based medicine. In this blog, we […]
The “Be What You See” Principle Imagine walking into a room filled with portraits, but all those portraits look eerily alike – a glaring lack of diversity. This scenario isn’t just confined to art galleries; it’s a reality in many public sector offices. The absence of ethnic diversity in these positions isn’t just a numerical […]
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 […]
We are a small but growing group of Rare Advocates and small Rare Disease Charities. We have limited resources but a great motivation to improve quality of life and wellbeing. We aim to become a force for improvement in holistic care coordination for our diverse Rare Disease Community. RCNet currently have members from England, Wales, […]
RCNet: The voice for the psychosocial needs and wellbeing of our Rare Disease Community. “We will ensure the patient voice remains central to the implementation of the framework, building on the close collaboration we already see across the national and international rare disease community”. The UK Framework for Rare Diseases 2021Although the inherent position within The UK Framework […]
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 […]