The journal The Patient has published a review about еstablish support groups in rare diseases. Support groups are an important resource for many people living with rare diseases. CINAHL and PubMed have searched for publications that described the benefits or perceived benefits of participating in rare disease support groups or the barriers and facilitators of establishing and maintaining them were eligible for inclusion, from January 2000 to August 2015, with no language restrictions. Ten publications were included in the scoping review. There was no trial evidence on support group benefits. All ten publications reported on the perceived benefits of participating in rare disease support groups. Rare disease support groups are an important source of emotional and practical support for many patients. The full-text review you can find here.
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