What Is Waardenburg Syndrome?
9. Epidemiology
Since Waardenburg syndrome is a genetic condition, there is no cure. It is also rare and support groups can become important to help connect patients with other patients and families to help provide additional support. There are also organizations that provide patient centered information that can be crucial to increase awareness and educate patients.
These support and advocacy groups are vital as they can help direct patients and family members to other resources, research, clinical trials, and services. There are also organizations that have their own experts who are available as medical advisors or are able to provide lists of clinics and doctors. Online support groups and forums can also be beneficial for moral support.
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