We are proud to announce our official support of the “Rare disease Advancement, Research, and Education (RARE) Act” of 2018.
The bill was introduced on Rare Disease Day 2018 by Senator Carson of Indiana and Senator Costello of Pennsylvania.
The goal of the bill is to, “expand and improve the programs and activities of the Department of Health and Human Services for awareness, education, research, surveillance, diagnosis, and treatment concerning rare diseases and conditions.”
The RARE Act increases Congressional authorizations for several federal programs that rare disease patients rely on, including the NIH Rare Diseases Clinical Research Network, and directs relevant health agencies to dedicate more resources towards rare disease patients and physicians.
For more information, click here.