Alpha-mannosidosis

Organizations

Are there good support groups for alpha-mannosidosis?

There are several support groups available for people with alpha-mannosidosis online. The National MPS Society provides support for people and families affected by mucopolysaccharidosis and other lysosomal storage disorders like alpha-mannosidosis. The MPS Society-UK also provides similar support. The International Society for Mannosidosis and Related Diseases is an international support resource for alpha-mannosidosis. In addition, visit Discover Alpha-Mannosidosis for patient and caregiver resources.

References

International society for Mannosidosis & Related Diseases http://www.ismrd.org
MPS Society-UK http://www.mpssociety.org.uk/support
MPS Society https://mpssociety.org/
Discover Alpha-Mannosidosis Retrieved from The National MPS Society, which provides support for people and families affected by mucopolysaccharidosis and other lysosomal storage disorders like alpha-mannosidosis. The MPS Society-UK also provides similar support. The International Society for Mannosidosis and Related Diseases is an international support resource for alpha-mannosidosis that can help connect patients together.

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.

References

International Society for Mannosidosis & Related Diseases (n.d) Retrieved rom http://www.ismrd.org
MPS Society-UK (n.d) Retrieved from http://www.mpssociety.org.uk/support
MPS Society (n.d) Retrieved from https://mpssociety.org/

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.

References

Health Central (n.d) Retrieved from http://www.healthcentral.com/chronic-pain/coping-439459-5.html

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Alpha-mannosidosis

Organizations

Are there good support groups for alpha-mannosidosis?

References

References

How do I start a support group for alpha-mannosidosis?

References

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Alpha-mannosidosis

Organizations

Are there good support groups for alpha-mannosidosis?

References

References

How do I start a support group for alpha-mannosidosis?

References

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