Importance of network approach highlighted in Scotland rare disease plan

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The Scottish Government has released its proposals for developing rare diseases across Scotland, and the vital role of networks, which includes the Scottish Muscle Network, is integral to the plans.

The plans highlight the importance of networks in linking together health professionals, patients and the voluntary sector to develop specific services for people who have complex needs, such as muscular dystrophy and neuromuscular conditions.

The Scottish Government's proposals are part of the UK Strategy for Rare Diseases which applies to the provision of services for people with rare conditions in all four countries in the UK. The plans outlined in the strategy include:

  • equal access to high quality services for every individual through integrated personal care plans
  • a patient-centred, coordinated approach to services, specialist healthcare and social care support
  • supporting specialised clinical centres to provide expert and high quality clinical care to patients, their families and carers
  • backing education and training programmes that enable health and social care professionals to better identify rare diseases to help deliver faster diagnosis and access to care and support
  • promoting the UK as a leading location for research into rare diseases

Within the plans, the Muscular Dystrophy Campaign and Action Duchenne's partnership with the Chief Scientist Office for co-funding a Clinical Research Fellowship is highlighted as an example of collaboration with rare disease charities.

Alex Neil MSP, Cabinet Secretary for Health and Wellbeing, commented:

We are committed to the provision of a healthcare system where we have integrated health and social care with a focus on prevention, anticipation and supported self-management.

This Implementation Plan for Scotland reflects some of the excellent work of relevance to people living with rare diseases in Scotland carried out by partners from across the NHS, universities, enterprise, industry, social care and the third sector. It also acknowledges the importance of a timely and accurate diagnosis, allowing appropriate treatment to start as soon as they receive it, and allowing people with rare conditions and their families/carers to access support services across NHS Scotland and the third sector.

For more information and to get involved in our campaigning activity in Scotland please get in touch on 020 7803 4839 or by email at

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