New research announced into mental health impact of rare diseases

Life sciences consultancy RBW Consulting has announced it is funding a clinical research project in partnership with Rare Disease Research Partners. The partnership will see research being conducted that aims to provide insight into how a rare disease diagnosis can affect the mental health of the patient, their family and carers.

This research into the mental health impact of a diagnosis aims to develop an evidence-based best practice to better support this large patient group. 

The research will involve a group of experts including psychologists and family groups, and will be published in the second half of 2021. 

It’s thought that 3.5% - 5.9% of the world’s population are living with a rare disease. Rare diseases are often chronic and can be difficult to diagnose due to a lack of clinical research in the area.

The UK government recently announced its Rare Disease Framework with the hope of speeding up diagnosis, increasing awareness and improving treatment and care for the 3.5 million people with a rare disease in the UK.

Dr Tom Kenny said: “There is a distinct need in the rare disease community from the moment of diagnosis. There is often a period of shock, grieving and a complete lack of certainty for the patient and their family.  

“While rare diseases individually affect a small number of people, the total rare disease community is significant and largely under-serviced by existing healthcare systems. My aim for this research is to have a positive impact on the quality of life for all those that are affected by a rare disease.”  

Emma Thorp, chief growth officer at RBW Consulting, added: “The difficulties that rare disease patients face is an issue incredibly close to my heart, having first-hand experience supporting a parent with a rare disease. The mental health impact is huge for both patients and their loved ones. Mental health and emotional support are often not considered or prioritised during complex treatment pathways so we really hope Tom’s research will help to change this. 

“As a partner to the life sciences industry, we feel it is both a privilege and a responsibility to play a role in supporting the patient population. This is why we are funding this research in full. Dr Tom Kenny is an impressive, talented and well-informed figure in the rare disease community and we’re looking forward to seeing what he discovers through this life-improving research. We could not be prouder to be working with Rare Disease Research Partners.”