… disease patients and patient organizations, the adage, ‘alone we are rare, together we are
strong’, holds true. Rare disease … , create a registry, and advocate for drug development and …

… of patient advocacy groups with government research funding and regulatory entities; the
role of patient advocacy groups in … patient registries and disease natural histories; the role of …

… Diseases Clinical Research Network (RDCRN) Program is the requirement for each Consortium
to include patient advocacy groups (… This article outlines the roles patients and PAGs …

… They divided their patients into two groups according to … group contained 51% of the male
patients but only 22% of the female patients and that in the mild group the average disease …

… when trying to identify patients with rare diseases or subsets of rare diseases. “Big data”
can be of value for improving our understanding of rare disease patient populations. This is …

… When we set up a program, we look at the disease state and demographic makeup of its
population—is there a higher risk or propensity for specific age, race, ethnic, or religious groups…

… to improve outcomes in rare neurological diseases has increased hope among people with
lived … Rare disease patient organizations (RDPOs) may enhance patient experiences, inform …

… patient advocacy organizations. The article explores how rare-disease patient advocacy groups
… for rare disease patient organizations – most notably, globalization – are also examined. …

… opposed to corporate lobbies, he fails to mention patient advocacy groups as one of
those citizen groups.Furthermore, his discussion of the reform of the Food and Drug …

… (19 percent), the overwhelming majority of what we call patient groups are organized
around a single disease (70 percent). In an effort to quantify rates of coalition formation, we …