1 in 17 people in Scotland will be affected by a rare condition at some point in their lives. A condition is considered rare if it affects fewer than 1 in 2,000 people within the general population. Currently, there are over 6,000 known rare diseases. Many people living with a rare condition in Scotland face fundamental challenges in relation to their care. People have reported that some health professionals involved in their care do not know enough about their rare condition to support them. This can result in a delayed diagnosis, a lack of information and missed opportunities to access appropriate care, treatment and research. Care can also be poorly coordinated, contributing to people feeling lost within the healthcare system, unable to effectively manage their condition and, in some particularly concerning situations, failing to receive correct care and treatment. The implementation of the new UK Rare Diseases Framework provides an opportunity for change. The Framework contains four priorities: helping patients get a diagnosis faster, increasing awareness of rare diseases among healthcare professionals, better coordination of care, and improving access to specialist care, treatment and drugs. In 2021, the Scottish Government will develop a Rare Diseases Action Plan, which will set out how the priorities identified in the Framework will be addressed. To successfully deliver the priorities of the Rare Disease Framework, and improve patient outcomes for those living with rare conditions, a Rare Conditions Coordination Service for Scotland should be established. A Rare Conditions Coordination Service for Scotland could: Contribute to the delivery of the UK Rare Diseases Framework and Scottish Rare Diseases Action Plan. Provide infrastructure to collect information on rare conditions across Scotland that can be used to inform service planning. Provide a central point of information and support for health professionals so that they can better support people with rare conditions. Provide education and training materials for NHS Scotland healthcare professionals. Provide every patient with a rare condition with access to a care coordinator. Provide people living with rare conditions and their families, access to comprehensive, holistic information and support. The Health and Sport Committee of the Scottish Parliament should consider whether a nationally funded rare conditions service should be funded.
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