Supporting patients and families with Mucopolysaccharidosis

Founded in 1985, MPS Austria supports children with Mucopolysaccharidosis and other similar Lysosomal diseases, and their families, by helping to increase quality of life.

MPS Austria’s vision is that ‘life should be worth living’ for children with Mucopolysaccharidosis (MPS) – a group of rare genetic diseases caused by enzyme deficiencies, and ‘make patients smile’ is its motto when it comes to supporting these patients.

The charity is committed to offering emotional support to patients and their families, raising awareness of these life-changing diseases, and funding and fostering research into potential treatments and cures.

In this eBook, MPS Austria looks at how patients live with these rare types of Lysosomal diseases as they progress into adulthood, the impact on parents, and why the charity does what it does.

Adolescence

MPS diseases were first described in 1917 and 1918, and there was no therapy available to give to patients living with these diseases. Initially, it was thought that these patients suffered with hypothyroidism and they were given iodide as a treatment, but to no effect. Since then, however, our knowledge of these types of diseases has improved, leading to medical progress which has allowed people living with these diseases to start thinking about their future.

These new therapies have given patients better chances and improved quality of life – however, this raises new challenges for patients and families such as social aspects, school, education, profession, and partnership.

What does the charity do?

MPS stands for ‘Miteinander Perspektiven Schaffen’ – creating perspectives together. This slogan encompasses how MPS Austria works closely with patients and families to support all affected by these diseases and to raise awareness through campaigns such as the MPS Austria therapy week.

MPS Austria offers a wide range of consultation, help, and support, and organises conferences to educate all those who are impacted. It also creates promotional and informational material such as brochures, banners, posters, and videos, and supports both national and international research projects.

Discover MPS Austria’s eBook to find out more about living with these rare diseases.

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