NORD’s Washington Office

NORD provides advocacy for all members of the rare-disease community. We strive to focus public attention on the need for funding for research, for access to treatments, and for fair and reasonable insurance and reimbursement options. Every voice is important in this process, and the NORD staff encourages everyone to become educated about the issues and involved in solving them. You are invited to visit this Web page often to read about ways you can become an advocate. Current areas of interest are listed below. For additional information on these and other topics related to rare-disease advocacy, contact:

Diane welcomes your questions related to policy issues. Medical questions should be directed to NORD’s Registered Nurse (RN@rarediseases.org) or NORD’s genetic counselor (Genetic_Counselor@rarediseases.org).

Senate Approves Funding for Pediatric Device Development

The Senate has passed a bill containing $2 million for development of pediatric medical devices for which NORD, the American Academy of Pediatrics, the Elizabeth Glaser Pediatric AIDS Foundation, and the American Thoracic Society provided advocacy. Details.

Advocacy Alerts

Lifetime Insurance Caps Bills Introduced in Congress. Details.

New Comparative Effectiveness Bill Introduced. Details.