Are there good support groups for Alpha-Mannosidosis?
There are several support groups available for people with Alpha-mannosidosis online. The National MPS Society of the United Kingdom (http://www.mpssociety.org.uk/support/) provides support for people and families affected by Mucopolysaccharidoses and other lysosomal storage disorders like Alpha-mannosidosis. ISMRD (http://www.ismrd.org/), the International Advocate for Glycoprotein Storage Diseases, is the international support resources for Alpha-mannosidosis.
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Where do I find other people with Alpha-mannosidosis?
You can find other people with Alpha-mannosidosis online through different support groups like the National MPS Society of the United Kingdom (http://www.mpssociety.org.uk/support/) or the ISMRD (http://www.ismrd.org/), the International Advocate for Glycoprotein Storage Diseases.
If you are interested in meeting other people with Alpha-mannosidosis in person, this may be difficult since it is a rare genetic condition. However, if you see doctors that are familiar with Mucopolysaccharidoses or other Lysosomal Storage Diseases, they may know other people with Alpha-mannosidosis in your area that they can put you in contact with.
How do I start a support group for Alpha-Mannosidosis?
If you are unable to find a support group in your area or online that is helpful to you, you can start your own support group. First, talk to other support group leaders and see if they have helpful information. You also may want to look for resources that your group may need before you start your support group. If you want to start a support group online, you may be interested in using social media platforms such as Yahoo!, Groups, or Facebook to connect with others. If you want to start a support group in person for Alpha-mannosidosis, this may be challenging since this is a rare genetic condition.