Governmental Advocacy Resources

The Dup15q Alliance staff gathered information on Governmental Advocacy groups to give our families the resources they need to join and amplify the advocacy community to be better heard in state and local government. 

nord logo transparent 2019
For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies, advancing medical research, and providing patient and family services for those who need them most. NORD works closely with advocacy partners on the federal and state level to encourage policies that are supportive of the needs of rare disease patients and their families.
The mission of the Rare Action Network® (RAN) is to connect and empower a unified network of individuals and organizations with tools, training, and resources to become effective advocates for rare diseases through national and state based initiatives across the United States. RAN is the nation’s leading rare disease advocacy network working to improve the lives of the 30 million Americans impacted by rare disease. The goal of RAN is to ensure that the rare disease community is represented and supported in all 50 states.
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Rare Disease Legislative Advocates is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. By growing the patient advocacy community and working collectively, we can amplify our many voices to ensure that rare disease patients are heard in state and federal government. Advocacy Tools: RDLA Legislative Scorecard: Rare Disease Legislative Advocates compiled its scorecard based on membership in the Rare Disease Congressional Caucus and action taken on legislation important to the rare disease community in the 115th Congress.
Reagan UDall Foundation
The Reagan-Udall Foundation for the FDA is an independent nonprofit corporation located in the District of Columbia. The Foundation was created by Congress in the Food and Drug Administration Amendments Act of 2007 (FDAAA) “to advance the mission of the Food and Drug Administration to modernize medical, veterinary, food, food ingredient, and cosmetic product development, accelerate innovation, and enhance product safety.”