Rare Disease Day 2023: the importance of well-coordinated care
Many rare conditions, like polycystic kidney disease (PKD), are lifelong and complex. As a result, people affected need support and expertise from a wide range of healthcare professionals.
For those with PKD, these are likley to include GPs, nephrologists, geneticists, specialist nurses, and surgeons, in the very least. This often means having multiple appointments across different settings and on different dates.
Effective coordination of care therefore is essential to help patients 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 peopleʼs quality of life. People like young mum Aria (below), whose little girl Hazel was diagnosed with Autosomal Recessive Polycystic Kidney Disease (ARPKD) - a rare form of PKD - as a baby.
We welcome the report Genetic Alliance UK has published to increase awareness of best practice among healthcare professionals and help them work together effectively in future to support people with rare conditions. We also hope that this report will help the NHS and governments across the UK to learn from what is already working well. Find out more and read the report.
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