Rare Diseases Information Toolkit

Learn how to get engaged in the research and development of medicines for rare diseases.

Provides links to a variety of advocacy tools such as tip sheets, videos, voting resources, glossaries, and a directory to find your local representative.

Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. RDLA believes that every voice matters and that patients are the key to changing public policy.

Here you can apply to join the Rare Action Network, which is a 30+ million person community working towards improving the lives of patients with rare diseases. You can also encourage your elected officials to implement policies that help rare disease patients and families.

Use these resources to advance your ability to research rare diseases.

NORD's advocacy toolkit.

Apply to be a part of a taskforce that focuses on improving state-level policy for rare disease patients and families across the country.

Learn about the public policy positions for which NORD advocates.

This page is updated daily to provide timely information on NORD's policy efforts.

This page summarizes how NORD has advocated for public policies that help the rare disease community. Additionally, it provides opportunities to get involved.

Support legislation for newborn screening policy.