Training & Capacity Building

There is currently no structured training pathway for early career researchers, including allied healthcare professionals, in rare disease research. This gap is particularly evident in clinical trials methodology, trial delivery, and stakeholder engagement. The absence of rare disease-specific doctoral training programmes, limited post-doctoral funding, and a lack of cross-disciplinary training opportunities have contributed to career instability and challenges in retaining skilled researchers. Addressing these barriers is essential for building a sustainable rare disease research workforce and driving long-term improvements in patient care. 

Our approach will focus on establishing a comprehensive training and capacity-building framework to support early career researchers in rare diseases. This includes the development of a translational science/clinical PhD training scheme to build expertise in rare disease research, alongside a dedicated professional and post-doctoral training fellowship scheme to provide structured career progression. Additionally, we will launch a cross-disciplinary training platform that integrates key areas such as genomics and rare disease clinical trials, ensuring researchers develop the complementary skill sets needed for translational research. 

By embedding training and capacity building at the heart of the ARDT project, we will create a robust pipeline of skilled researchers. This effort will enhance career stability, foster interdisciplinary collaboration, and improve retention within the field. Ultimately, our work will strengthen the UK’s capability to conduct high-quality rare disease research, supporting the development and delivery of innovative treatments for people living with rare conditions.