Patients With Rare Diseases and the Power of Online Support Groups: Implications for the Medical Community.

ABSTRACT:

Background

Previous studies have shown positive tangible health benefits from using online support communities for informational support, daily living support, and emotional support. The specifics of how these communities can be improved have not been studied in detail.

Objective

This study will investigate various sources of information that patients with genetic disorders use to learn more about their condition. We will be using patients with Ehlers-Danlos Syndrome (EDS) as a typical representation of the wider group of patients with genetic disorders. This study will also investigate the benefits and disadvantages of web-based platforms and how they can be improved.

Methods

We used quantitative and qualitative analyses in this study. We undertook a web-based questi

SUBMITTER: Ashtari S 

PROVIDER: S-EPMC10540027 | biostudies-literature | 2023 Sep

REPOSITORIES: biostudies-literature