New research released with recommendations for improving psychological support at the point of a rare disease diagnosis
Crawley (UK) – Life sciences talent and strategic consultancy, RBW Consulting and Rare Disease Research Partners (RDRP), an organisation focused specifically on supporting research and access to treatment for people living with rare conditions, have today unveiled the findings of a year-long research project into the mental health impact of a rare disease diagnosis.
Recognising gaps in both the evidence base and practical guidance on the type and extent of psychological support needed by families and caregivers of children at the time of rare disease diagnosis, RDRP conducted an extensive literature review and working with a panel of experts, developed a statement of good practice to raise awareness of the topic and provide guidance and support for healthcare and other supporting professionals and organisations.
The findings crystallised elements of the diagnosis journey which contribute to an increased risk of negative mental health outcomes for the individual and their family, which include a delay in receiving a diagnosis, poor diagnostic delivery and a lack of information immediately after diagnosis. The statement of good practice aims to address these with recommendations for an improved approach. It has already been endorsed by many individuals and organisations in the rare disease community, including EURORDIS, National MPS Society, Medics 4 Rare Diseases, Genetic Alliance and Cambridge Rare Disease Network.
Dr Tom Kenny, CEO of RDRP says: “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.”
Emma Thorp, chief growth officer at RBW explains how the project came about. “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.”
Ahead of the release of the project findings, RBW Consulting hosted a public webinar attended by industry, healthcare professionals, patient organisations, patients and carers where the research findings were revealed for the first time and discussed by a panel of experts. A recording of the webinar, along with the full literature review and statement of good practice, is now available to download on the RBW Consulting website.
For media enquiries, please contact: firstname.lastname@example.org. The full literature review, statement of good practice and recording of the webinar are available to download.
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