Winner
Cure DHDDS Inaugural Scientific Exchange Meeting
by Cure DHDDS and Costello Medical
Summary of work
DHDDS is an ultra-rare genetic condition caused by mutations in the DHDDS gene. To date, only 70 individuals with DHDDS have been identified worldwide and due to the neurodegenerative impact of the mutations, finding a cure is of paramount importance. Cure DHDDS are a charity seeking to support families diagnosed with DHDDS gene mutations and fostering collaborative research efforts to ultimately find a cure, faster. To our knowledge, the Cure DHDDS inaugural scientific exchange meeting was the first of it’s kind, bringing together 26 research scientists across five countries in a virtual meeting to share the entire spectrum of DHDDS science through a series of lightening talks and interactive breakout discussions. The goal of the meeting was prioritising unmet research needs to ultimately accelerate the rate of development of a cure for DHDDS. 100% of meeting attendees said the meeting provided them with a stronger understanding of research surrounding DHDDS and NUS1 gene mutations and allowed them to create new contacts, with 10/26 attendees collaborating across four projects in the last six months following the meeting. Furthermore, the meeting was conducted on an entirely pro bono basis, demonstrating the power of shared objectives in improving the lives of patients.
Judges’ comments
‘Cure DHDDS Inaugural Scientific Exchange Meeting’ is an effective and incredibly important programme in an area of such unmet need. The judges could really feel the team’s passion for finding a cure coming through and were impressed by what was achieved with a modest budget. An example of real scientific exchange and a deserving winner.
