Mucopolysaccharidosis Type VI

Organizations

How do I start a support group for Mucopolysaccharidosis Type VI?

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 VI, 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.

http://www.healthcentral.com/chronic-pain/coping-439459-5.html

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