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.