| Using the intemet to locate health related information is increasingly common in the general population. This is especially true for individuals with chronic medical conditions and their caregivers. The genetic disorder 22q11.2 deletion syndrome has multiple associated medical conditions. To identify what resources are essential to a website that serves patients with 22q11.2 deletion syndrome and their caregivers, we reviewed current 22q11.2 deletion syndrome resource websites and surveyed patients and caregivers to identify content gaps and needs. The resulting paper provides recommendations for websites to better serve adolescents and adults with 22q11.2 deletion syndrome, and to provide educational and other resources for clinicians who are unfamiliar with the condition. |
