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).

"Front-Burner" Issues

These are issues of immediate concern to NORD.

Follow-on Biologics
Letter to Congressional Energy and Health Subcommittee in response to questions about the creation of a pathway for approval of follow-on biologics. Details.

Improving Access to Safe Drugs
and Medical Devices for Children
NORD supports efforts of the American Academy of Pediatrics to ensure that the medications used in children are tested and labeled appropriately, and that medical devices for children are designed specifically for pediatric use. Read about these efforts.

FDA Funding
The administration's budget request for FDA funding is inadequate, according to a press release from the Alliance for a Stronger FDA. Read the press release.

Senate Approves Newborn Screening Saves Lives Act
The U.S. Senate has unanimously approved the Newborn Screening Saves Lives Act (S. 1858). The bill now goes to the U.S. House of Representatives for consideration. Details.

FDA Budget Coalitions to Merge
The Coalition for a Stronger FDA and the FDA Alliance have announced that they will merge into a single organization known as the Alliance for a Stronger FDA. Details.

Social Security Administration Sponsors Hearings
Diane Dorman, NORD’s Vice President of Public Policy, presented testimony at hearings this week sponsored by the Social Security Administration (SSA). The SSA hopes to reduce needless delays and challenges for people with rare diseases who apply for disability assistance. Details.

Letter from Social Security Administration

Access to Life-Saving Medicines Act
Currently, there is no well-defined regulatory pathway at the U.S. Food and Drug Administration (FDA) for follow-on (generic) versions of biologics-drugs or other preparations made from living organisms or their products. Bipartisan legislation has been introduced in the U.S. House of Representatives to create such a pathway. Read the proposed legislation. Background information on biologics. Statement from Rep. Henry Waxman (D-CA), one of the sponsors. NORD’s letter to Rep. Waxman.

Genetic Nondiscrimination Act
The promise of genetic medicine is far-reaching, but without the proper protections, many people may not seek testing to determine whether they may be predisposed to a particular disease or condition. Read NORD’s letter to Senators Edward Kennedy (D-MA) and Michael Enzi (R-WYO) regarding the Genetic Information Nondiscrimination Act, now pending in Congress. NORD has joined other patient organizations in wholeheartedly supporting this legislation.