Rare disease: final progress report

7. Next Steps

As referenced throughout this report, the conclusion of the Rare Disease Strategy does not conclude our efforts for the rare disease community in Scotland.

On the 26 February 2020, the Minister for Public Health, Sport and Wellbeing penned an open letter to the rare disease community setting out the plans for the continuation of rare disease policy.

The letter confirmed the publication of this report to coincide with the conclusion of the existing strategy. The letter also set out our continued support to the UK Government’s Rare Disease Framework which was published on 9 January 2021 to replace the existing strategy.

The Framework takes a 4 nation approach to supporting those living with a rare disease. The vision and objectives are based on stakeholder engagement and the results from the Rare Disease National Conversation survey. As we have done in previous years, Scotland will develop its own action plan setting out how we will implement the Framework taking into account the population needs and health system we have here in Scotland.

To do this we will establish a new Rare Disease Implementation Board to oversee the action plan. Further details will be in the Action Plan which will be published in 2021. Throughout the development of the Plan there will be many opportunities for the rare disease community to engage with us to help shape and inform the actions.

Throughout the course of 2021 we will see the publication of a range of healthcare strategies which will have a direct or in-direct effect on the rare disease community. We will ensure emerging health policies take into consideration the rare disease communities needs and ensure this is reflected in our action plan.

One emerging policy area which will have a considerable effect on the rare disease community will be Scotland’s future Genomics policy. As referred to earlier in this report, the “Genome UK Healthcare Strategy” paves the way for Scotland’s future in genomics healthcare.

The publication of Scotland’s own Genomics Healthcare Implementation Plan is expected in 2021/2022. We will ensure the needs of the rare disease community are reflected in the future plan.

As we move forward developing the future rare disease Action Plan we will look to new and existing partners for help and support.