Perceived Benefits of Rare Disease Patient Advocacy Groups
Patient advocacy groups for rare diseases are essential yet underutilized to expedite drug development as of today. The rare diseases patient communities have considerably transformed and evolved over the past ten years to facilitate the patients with medical conditions or potential medical conditions. Rare Disease Patient Advocacy Groups are formally organized groups with a mission and concept. These groups take steps that attempt to support people affected by those rare medical conditions along with their families. Patient advocacy groups are nonprofits groups that raise funds for research. The groups help in- · Defining meaningful clinical endpoints · Serve in the design of patient-reported outcomes · Design and manage registries · Provide information on clinical trials and · Help communicate about the most promising compounds for rare diseases Patient Advocacy Groups become a member of administrative decision-making bodie