Our Impact

Giving back to the industry we love

When we say our work has purpose at RBW Consulting, we mean it. We are so passionate about the industry we serve, we strive to do as much as we can to support it and those that need our help. This is why we set up the RBW Consulting Impact Program.?

Our Impact Program sees us directly investing in patient-focused initiatives. The key criteria for our projects is that it must fulfil an unmet need, whether that is a shortage of knowledge, data, discussion or practical implementation on important issues within the health or life science sector.

An Emotional Odyssey

The Impact Program kicked off in 2021 when we partnered on an enormously important project with?Rare Disease Research Partners,?an organisation focused specifically on supporting research and access to treatment for people living with rare conditions.

‘An Emotional Odyssey' was the first project funded by RBW, led by RDRP, which looked into the mental health impact of a rare disease diagnosis. The goal was to shine a spotlight on issues, prompt discussion and create a set of guidelines on the practical ways that all those involved can work together to support those living with a rare disease at the point of diagnosis.

The project was a huge success and the resources produced are now being actively disseminated within the rare disease community, through multiple channels including peer review publication. For all the details on this project visit?An Emotional Odyssey (rbwconsulting.com)

Progress and Impact

Since the project concluded we have been thrilled to see numerous developments and recognition of the project’s value add to society and the rare disease space.

The first and perhaps most significant of these is?the inclusion of the research in the action plan for much needed progress in the area by the UK Government as well as part of wider EU regulations. It is absolutely fantastic to have been involved with a project that has been officially implemented around Europe to kick start real and vital change in the area. You can find more about this (action 21) at?https://lnkd.in/eic2b-V4?.

Tom Kenny, CEO at Rare Disease Research Partners, has been heavily involved in the project since the outset and an integral part of the project’s success. Since its conclusion and as a result of its coverage, Tom has received numerous invitations to specialist organisations in the rare disease arena due to his wealth of knowledge and passion in the area. First of which was the invite to speak at?the?European Joint Programme on Rare Diseases?conference and workshop, Rare Together.

The European Joint Programme on Rare Diseases (EJP RD) unites more than 130 institutions spanning 35 countries to establish an all-encompassing and enduring ecosystem that fosters a positive cycle of research, healthcare, and medical breakthroughs.

The Rare Together workshop has a twofold objective: to increase awareness regarding the psychosocial effects of living with a rare disease and to assemble a consortium of researchers specializing in mental well-being and social sciences concerning rare diseases, with the ultimate goal of driving impactful transformation.

Tom has also been invited to be part of the EURODIS Mental Health Group who specialize in empowering, partnering and advocating for people living with rare disease in Europe?and also Rare Disease International Mirror Action group, a global alliance for of persons living with rare disease.

Current and Upcoming Projects

Our most recent Impact Program, ‘Trial and Error,’ has looked at inclusivity in clinical trials.?Whilst the topic of diversity and inclusion in clinical trials is rightly a hot topic that is attracting huge attention and research more broadly, the focus on?age inclusivity?has not on its own been singled out by many.?Alongside the fantastic International Longevity Centre, we have launched a new report that takes a fresh look at older age inclusivity in clinical trials and lobbies for much needed change. We hope that we experience as much success and important progress through this project as ‘An Emotional Odyssey’.

Though we aren’t a big player when it comes to some of the giant companies operating in the life science space, we are mindful that our support could be a drop in the ocean. But that doesn’t put us off! Our grant criteria are broad, and we’re particularly interested to hear about any areas that are currently underrepresented. We are currently considering our next Impact Program and welcome any suggestions or potential partners. Do you have a patient-focused project within your organisation that would provide great benefit to patients but is unable to be commercially funded? If so - we want to hear about it!