Advocacy

NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD) URGES U.S. SENATE TO IMMEDIATELY END ANNUAL AND LIFETIME INSURANCE CAPS. The National Organization for Rare Disorders (NORD) is urging the U.S. Senate to immediately end annual and lifetime health coverage insurance caps. Currently, private insurers may set lifetime and/or annual caps on individual and family health care coverage. Many Americans with chronic diseases, rare disorders, or major medical crises exhaust their insurance benefits under this system. The result is often financial crisis or even bankruptcy. Read NORD’s advertisement appearing in The Politico. Contact your U.S. Senator.

MAKE YOUR VOICE HEARD ON ACCESS TO PUBLICLY-FUNDED RESEARCH RESULTS. The White House is seeking public input on policies concerning access to publicly-funded research results, such as those that appear in academic and scholarly journal articles. Currently, the National Institutes of Health (NIH) require that research funded by its grants be made available to the public online at no charge within 12 months of publication. The Administration is seeking input as to whether this policy should be extended to other science agencies and, if so, how it should be implemented. The Office of Science and Technology Policy (OSTP) in the Executive Office of the President and the White House Open Government Initiative are launching a "Public Access Policy Forum" to invite public participation in developing a new policy pertaining to public access to federally-funded research results. Read More.