In 2021, the UK Rare Diseases Framework was published to set out a vision for improving outcomes for people with rare diseases. The Framework set out four priorities around delivering earlier diagnosis, increasing awareness among healthcare professionals, improving access to specialist treatment and providing co-ordinated care.
England’s first rare Disease Action Plan followed in 2022, which turned the priorities of the framework into concrete actions. The Government, through work across the health care sector and with the rare diseases community, has made significant progress. However, there is still more to do. The Government has published its England Rare Diseases Action Plan 2023 to further improve the lives of those living with rare diseases. It will continue to work to reduce health inequalities faced by people living with rare diseases, lower barriers to participation in clinical research and improve the way services are commissioned in NHS England.
These commitments are supported by funding for ground-breaking research, including £790 million investment into Biomedical Research Centres and a £12 million UK Rare Disease Research Platform. Moving forward, the Government will continue to work closely with the delivery partners and the rare disease community to monitor progress and drive change. I will continue to follow this issue closely.