Role of Patient Advocacy Groups
Patient advocacy groups play a key role in educating and supporting patients with rare diseases, and this is certainly true within the field of vascular anomalies. Incorporation of local and national patient support and advocacy groups is a factor that each program should consider. Particularly in the field of oncology, there already exists a strong framework for incorporation of patient advocacy groups into the clinical enterprise as well as involvement with industry and clinical trial recruitment.21,22 Families will look to these groups for information and support. Often this relationship is beneficial to all, but at times, input from advocacy groups can differ from recommendations of the clinical team. Teams should be aware of the available support networks for patients. It can be helpful for programs to share a recommended list of patient support groups and even direct patients and parents to helpful local resources and people. Our programs have each identified local patients who are part of national advocacy groups. These patients and advocates are included in program discussions about growth and structure, outreach, and direct patient support.