Emerging roles and opportunities for rare disease patient advocacy groups.

ABSTRACT:

Background

Patient advocacy groups (PAGs) serve a vital role for rare disease patients and families by providing educational resources, support, and a sense of community. Motivated by patient need, PAGs are increasingly at the forefront of policy, research, and drug development for their disease of interest.

Objectives

The study explored the current landscape of PAGs in order to guide new and existing PAGs on available resources and challenges to research engagement. We aim to inform industry, advocates, and healthcare personnel about PAG achievements and ways they are increasingly involved in research.

Design

We chose PAGs from the Rare Diseases Clinical Research Network (RDCRN) Coalition for Patient Advocacy Groups (CPAG) listserv and the National Organization for R

SUBMITTER: Patterson AM 

PROVIDER: S-EPMC10184204 | biostudies-literature | 2023 Jan-Dec

REPOSITORIES: biostudies-literature