Your resource to discover everything about Alpha Mannosidosis
A diagnosis of Alpha Mannosidosis can have a considerable emotional impact on patients and caregivers.
Alpha Mannosidosis is a rare inherited disease that can cause children and adults to suffer from skeletal deformities, coarse facial features, hearing loss, cognitive…
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Timely diagnosis of alpha mannosidosis is important as it can influence how well the individual does in the long-term…
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Your doctor may also refer the individual to see a metabolic disease specialist and/or clinical geneticist, who are more familiar with this rare condition.
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At present, there is no cure for the condition, and in general, treatment for alpha mannosidosis is based on the presence and severity of the various…
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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.
ISMRD is the international support group for Alpha Mannosidosis
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.
The information on this website is intended only to provide knowledge of Alpha Mannosidosis disease health topics. This information should not be used in place of advice from your GP or other healthcare professional. If in doubt please contact your doctor for advice. This website has been produced by Chiesi Pharmaceuticals. The website has been developed in accordance with industry and legal standards to provide information for healthcare professionals and the general public about Alpha Mannosidosis disease health topics. Chiesi Pharmaceuticals makes every reasonable effort to include accurate and current information. However, the information provided in this website is not exhaustive.
