Mucopolysaccharidosis Type VII
Are there good support groups for Mucopolysaccharidosis Type VII?
There are several support groups available for people with mucopolysaccharidosis type VII online. The National MPS Society is a community that has several support resources available. There is also a Facebook Group that serves as a support community for adults with various mucopolysaccharidoses and parents of children with these genetic conditions. This Facebook Group is entitled "MPS (Mucopolysaccharidoses)" and can be found at https://www.facebook.com/groups/166858949991311/.
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Where do I find other people with Mucopolysaccharidosis Type VII?
You can find other people with mucopolysaccharidosis type VII (MPS VII) online through different support groups like the United States's National MPS Society, the Canadian Isaac Foundation, or a Facebook group entitled "MPS (Mucopolysaccharidoses)" at https://www.facebook.com/groups/166858949991311/. If you are interested in meeting other people with MPS VII 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 MPS VII in your area that they can put you in contact with.
How do I start a support group for Mucopolysaccharidosis Type VII?
If you are unable to find a support group in your area or an online group 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 tips or suggestions on how to get started. 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 Mucopolysaccharidosis Type VII, this may be challenging since this is a rare genetic condition. It may be easier to expand the support group to include other related diseases. There are also groups for rare diseases in general, such as the National Organization for Rare Disorders (NORD) that connects patients with various rare diseases together.