The Funding Support for Rare Disease Research: Raising Awareness and Increasing Transparency report looks at major public sector research funding bodies: Medical Research Council, Wellcome Trust, Cancer Research UK (NIHR) about their funding programmes and also the researchers that look to these bodies for funding, to discover their experiences of how easy it is to access financial support for research into rare diseases.
The report found a gap between the way that the rare disease community perceives funding support and the actual support available.
The report highlights barriers to research and identifies areas of current good practice. It makes a series of recommendations:
- Awareness needs to be raised of funding opportunities for rare disease research through better promotion of existing programmes.
- Monitoring what is spent on rare disease to enable funding bodies to identify the proportion of their resources allocated to rare disease research.
- Methods to foster collaboration in the field of rare disease research should continue to be explored and exploited.
- Initiatives such as Research Design Service should be better promoted to support researchers in the field of rare diseases.
- Peer review of funding applications should include someone with experience in rare disease research.