Rare disease action plan: progress report 2026

5. Priority 3: Better Coordination of Care

Genetic Alliance UK: Rare Resources Engagement and Support Officer for Scotland

In June 2025, following open competition, the Scottish Government provided funding to Genetic Alliance UK to establish a pilot Rare Resources Engagement and Support Officer role for Scotland. This eight month pilot aims to support at least 90 families living with a rare condition across Scotland by providing high-quality information and tailored support.

We look forward to seeing the progress of this pilot. In addition to offering families a dedicated point of contact for additional support, the project’s reporting will strengthen the evidence base for improving care coordination and tailored support for people living with rare conditions.

Future Care Planning

A key part of enabling people living with a rare condition to shape their lives and their care around ‘what matters to them’ is ensuring resources are available that they and their healthcare professionals can easily access and recognise.

Previously called Anticipatory Care Planning, Future Care Planning has been adopted by the Scottish Government to support people of all ages, their families and carers to have person-centred conversations about managing and planning for changes in their life, health and care. Future Care Plans record what matters to the person, and guide staff providing urgent health or social care.

The Scottish Government has been working collaboratively with stakeholders to develop and provide inclusive, accessible information about Future Care Planning. As part of this work, content on NHS Inform has been updated, including the addition of a new page focused on talking about future care planning.

To support healthcare professionals training and learning resources on Having Realistic Conversations have been added to both the NHS Education for Scotland website and the Turas learning platform helping ensure that staff feel confident in using Future Care Planning effectively.

We will continue to promote Future Care Planning widely across relevant policy areas and in collaboration with Integration Authorities, Health Boards and other delivery partners, including development of national education resources for healthcare professionals.

Transitions to Adult Care

The Scottish Government published the National Transitions To Adulthood Strategy for young disabled people in June 2025. The aim of the strategy is to ensure that every young disabled person in Scotland feels confident in their transition to adulthood and is empowered and supported to control their own path to success.

This strategy adopts the Association for Real Change (ARC) Scotland’s definition of transition, and centres its improvement focus on young disabled people between the ages of 14-25 who are making the transition to young adult life. The focus on this period acknowledges that ‘transition’ is not a single event, but a process which takes place over a number of years, and is a period of personal development which can involve changes across all aspects of life.

Although the scope of the strategy extends beyond health services, it aligns with an important theme often raised by the rare conditions community: the need for more coordinated and joined-up care for young people living with a rare condition as they transition to adult services. We will continue to promote elements of the strategy that helps make life easier for young people living with a rare condition.

Digital Front Door

In line with the Digital Health and Social Care Strategy Delivery Plan (updated for 2025-2026) and NHS Scotland Operational Improvement Plan we continue to make progress in creating a more seamless digital experience in healthcare for the future.

The deployment of digital technologies will help to modernise services and improve efficiency. A stronger ‘digital first’ approach will support the provision of tools that enable personalised patient experiences, tailored health recommendations, and proactive health and care management.

We are accelerating the delivery of our “Digital Front Door” service. As part of this, we launched MyCare.scot on 3 December 2025 marking the first step in meeting the Programme for Government commitment to launch a personalised digital health service, making it easier for people to proactively manage their own health and care online. Like any digital service, good practice means the initial version will be evaluated thoroughly in Lanarkshire before we seek to spread and scale it across Scotland.

Invites are now being sent out to a select group of dermatology patients in Lanarkshire to access the first version of the service. To help develop the service, those deemed eligible are encouraged to sign up.

Over time, the aim of MyCare.scot is to allow people to securely access and manage appointments online, receive communications, interact with services, and view their personal information, making access fairer and consistent for all.

Acting as a ‘’Digital Front Door’’ to health and social care services within Scotland, this progress will benefit people living with a rare disease by improving access to care, reducing the burden of coordinating their care through MyCare’s administration and improving overall access to the information when required.