Rare Disease Legislative Advocates

Rare Disease Legislative Advocates (RDLA), is a program of the Every Life Foundation for Rare Diseases, a non-profit organization dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy.

Rare disease day is on February 28th and every year the Rare Disease Legislative Advocates, a program of the Every Life Foundation for Rare Diseases, hosts Rare Disease Week on Capitol Hill. The entire week provides a unique opportunity to raise awareness of key policy issues that affect amyloidosis.

Patient organizations, NIH and other government entities, medical researchers and pharmaceutical companies developing treatments for rare diseases all take part in the event.

RDLA is a clearinghouse of ideas that is open to all members of the rare disease community with an interest in sharing information around common causes and advocating for the introduction or enactment of legislation.