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DISEASE INFORMATION

Discover Alpha Mannosidosis

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QUICK FACTS

Frequently asked questions

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FOR HEALTHCARE PROFESSIONALS

Understanding Alpha Mannosidosis begins here

Your resource to discover everything about Alpha Mannosidosis

Alpha Mannosidosis is a rare genetic disorder caused by a deficiency in an enzyme within lysosomes in cells in the body that break down sugar molecules called oligosaccharides.1

Alpha Mannosidosis causes problems in many organs and tissues of the body.  The condition can cause children and adults to have intellectual disability, hearing loss, distinctive facial features, infections, and abnormalities of their skeletons.2

Alpha Mannosidosis is genetic, meaning it runs in families.3

If you, or someone in your family, has Alpha Mannosidosis, it’s important to know that you are not alone; support is available.

LEARN MORE ABOUT THE CAUSE OF ALPHA MANN

All about symptoms

Alpha Mannosidosis is extremely varied in its effects, and a wide range of symptoms are possible.4 The symptoms of Alpha Mannosidosis can sometimes be mistaken for those associated with other common medical conditions. Your physician may do perform a number of tests to arrive at a correct diagnosis.

SEE THE SIGNS OF ALPHA MANN

Join the Alpha Mannosidosis Community

You don’t need to face the challenges of Alpha Mannosidosis alone.
There’s a supportive community out there that’s eager to provide information, compassion, and advice. When you’re feeling low
(and there will be times), a host of organisations and support groups is just a few clicks away to provide support for your child and
you. Patient organisations and support groups often provide both information and support from others who have been through similar
diagnoses as a family.

Links are provided below to sites that you may wish to visit to help you to get further support from others who have been through similar experiences.

Patient organisations

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ISMRD is the international support group for Alpha Mannosidosis
The Society for Mucopolysaccharide Diseases, .
Other MPS groups around the world will also offer support. MetabERN is a network of healthcare providers and patient groups across Europe, providing support for people with inherited metabolic disorders such as Alpha Mannosidosis.
Lysosomal Diseases New Zealand is the support group for families in New Zealand.

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