RBW Consulting’s reveal of a year-long project into the mental health effect of rare disease diagnosis

RBW Consulting, a life sciences strategic and talent consultancy, disclosed the discoveries of a year-long study project into the mental health effect of a rare disease diagnosis.

In 2021 RBW Consulting completely funded the project managed by Rare Disease Research Partners, as part of its continuous dedication to support patient-focused initiatives.

Recognising gaps in the evidence base and practical guidance on the type and scope of psychological support required by relatives and caretakers of youngsters at the time of rare disease diagnosis, the RDRP conducted a literature study and created a statement of good practice in partnership with a panel of specialists to raise awareness of the topic and provide advice and support for healthcare and further supporting specialists and associations.

The findings identified parts of the diagnosis journey that contribute to a higher risk of harmful mental health consequences for the individual and their family, such as uncertainty in obtaining a diagnosis, poor diagnostic delivery, and a shortage of knowledge immediately after diagnosis. The goal of the good practice statement is to address these issues and make recommendations for a better approach. Many individuals and organisations in the rare illness world have already approved it, including EURORDIS, the National MPS Society, Medics4RareDiseases, the Genetic Alliance, and the Cambridge Rare Disease Network.

Chief growth office at RBW Consulting, Emma Thorp, stated: “I know first-hand the impact a rare disease diagnosis can have on a family and as a business, we’ve always wanted to “give back.” Investing in patient-focused research is the most relevant, most immediate way of impacting the patient populations that our clients serve. I’m delighted that we’ve been able to launch this research to coincide with Rare Disease Day 2022 and our hope is that it initiates further discussion around the practical ways that all those involved can work together to optimally support the rare disease community.”

CEO of RDRP, Dr Tom Kenny, stated: “Receiving a rare disease diagnosis is a pivotal point for a patient and their families. It can be an isolating and troubling time and without the right support it can have a long-lasting and negative impact on the mental health outcomes of the individual. Our research shows, however, that with the recommended safeguards and practices in place, the entire patient experience can be transformed.”