Mucopolysaccharidoses (MPS) is a group of rare, inherited, incurable metabolic diseases caused by disorders in the metabolism, in this eBook the Austrian MPS Society tell us more about the patient experience.
Providing invaluable support to people living with and affected by mucopolysaccharidoses, the Austrian MPS Society (also known as MPS Austria) is the only Austrian charity that is supporting patients and families living with MPS and other related diseases. This eBook delves further into the world of the society and explores the experience of the young patients living with MPS.
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Vision, motto, mission
MPS Austria was founded in 1985, with the aim of supporting patients and families living with the rare condition and helping to increase the quality of life. The society has the vision: ‘life should be worth living’, and depending on the needs of the family, a wide range of consultation, help and support is provided along with promoting the understanding of the condition.
‘Make patients smile’ is the motto. With majority of the patients being children, MPS Austria work hard to ensure the quality of life for children is the highest it can be. However, learning about mucopolysaccharidoses is one thing, but what about the views of the actual patients and those around them? This eBook provides further spotlight on the following:
- The impacts on the parents of an affected child;
- What is it like having a sibling living with MPS; and
- Living with MPS – from a patient perspective.
These topics highlight the driving force and reason as to why MPS Austria was created; as the mission of the society is: ‘making daily life easier for families with children suffering from MPS by providing advice and support, emotionally and financially’. In this eBook, we not only gain an insight into the life of a patient and those around them, but national and international MPS activities are highlighted too, to further raise awareness of the rare disease.
Further topics explored in the eBook
Understanding mucopolysaccharide storage diseases and boosting awareness of the rare disease is what the Austrian MPS Society strives to achieve. Within the eBook, we gain a further insight into MPS and the adequate therapy available to patients, we explore the quality of life improving for patients, and finally: we learn about MPS in adulthood.
Curious to learn more about mucopolysaccharidoses? Click here to check out the eBook