NORD briefs Senate on Rare Disease Day and backs H.46 advisory council
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Summary
The National Organization for Rare Disorders introduced its programs to the Senate Health and Welfare Committee, described Rare Disease Day activities at the State House and urged support for H.46, which would create a rare disease advisory council within the Department of Health.
Representatives from the National Organization for Rare Disorders (NORD) briefed the Senate Health and Welfare Committee on Feb. 19 about Rare Disease Day and ongoing state advocacy, and urged lawmakers to consider H.46, a bill to establish a rare disease advisory council housed in the Department of Health.
Carolyn Sheridan of NORD described the federal definition of rare disease (conditions affecting 200,000 or fewer people in the U.S.), said there are roughly 10,000 known rare diseases, and outlined NORD’s state‑level programs: a patient assistance program providing financial support for medication and travel, a medically reviewed rare disease database, a clinical network of Rare Disease Centers of Excellence, and public policy support. Sheridan said NORD will host advocates at the State House for Rare Disease Day events and expects to return when H.46 is before the committee.
Committee members thanked NORD and said they expect to review H.46. Sheridan noted some rare diseases are pediatric or genetic and that NORD maintains multiple databases (NIH/GARD and NORD’s own) to identify and track conditions. No formal committee action was taken during the presentation.
