In June 2014, Rare Disease UK (RDUK) hosted the second EUROPLAN National Conference for the UK as part of the European Union Committee of Experts in Rare Disease (EUCERD) Joint Action. The conference was an opportunity for patients and those working in the field of rare diseases to provide their views on the ongoing policy debate regarding the best way to commission, organise and coordinate the delivery of services for rare disease patients across the UK.
Over 80 attendees had the opportunity to hear from UK health departments’ officials. The conference focused on two key areas:
- Research into rare conditions: Attendees heard from representatives of each nation on the issues surrounding rare disease research, including the value of data registries.
- Centres of Excellence for rare diseases: Attendees heard about examples of good practice in the UK and considered the potential impact that new technologies may have on the future delivering of healthcare.
A central theme that emerged from the day was collaboration. This included collaboration in the delivery of patient care but also collaboration amongst the four home nations in the implementation of the UK Strategy. Speakers and attendees also noted that the UK should not focus solely on the UK but also consider a EU-wide approach, as resources and tools already exist to facilitate EU-wide collaboration.
A conference report was published shortly after and outlines the issues identified on the day and provides recommendations. These include calls for: concrete outcome measures to be in place to allow the implementation of the 51 commitments in each nation to be effectively monitored; collaborative research frameworks to be flexible and support contributions from centres outside core partnerships; and, Centres of Excellence to work across national borders to ensure the transfer of knowledge and expertise.