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Rare Disease Day: 28 February 2023

Updated: Mar 1, 2023

The importance of well co-ordinated care

Many rare conditions, like Fragile X syndrome, are lifelong and complex. As a result, people affected by Fragile X syndrome need support and expertise from a wide range of healthcare professionals such as: GPs, specialist consultants, phycologists, physiotherapists, occupational therapists, speech and language therapists, and learning disability nurses. This can mean having multiple appointments across different settings and on different dates. Effective coordination of care is essential to help people living with Fragile X syndrome and their families to minimise the impact of these appointments on their busy lives and help healthcare professionals to work together effectively to provide high-quality and joined-up care.

For Rare Disease Day 2023 we are working with Rare Disease UK and a wide range of organisations that support people living with rare conditions to raise awareness of how well-coordinated care can make a real difference to people’s quality of life. Genetic Alliance UK will publish a report on Rare Disease Day 2023 to increase awareness of best practice among healthcare professionals and help them work together effectively in future to support people with rare conditions.

Watch our animated video, created for us by the fantastic Animation Explainers, to raise awareness of Fragile X and Fragile X Premutation Associated Conditions and to mark Rare Disease Day 2023:


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