Rare Disease Council and Rare Disease Council Fund; created, report. (HB1995)

Introduced By

Del. Kathleen Murphy (D-McLean) with support from 11 copatrons, whose average partisan position is:

Those copatrons are Del. Dawn Adams (D-Richmond), Del. Lee Carter (D-Manassas), Del. Patrick Hope (D-Arlington), Del. Mark Keam (D-Vienna), Del. Mark Levine (D-Alexandria), Del. Ken Plum (D-Reston), Del. David Reid (D-Loudoun), Del. Danica Roem (D-Manassas Park), Del. Marcus Simon (D-Falls Church), Del. Shelly Simonds (D-Newport News), Del. Suhas Subramanyam (D-Sterling)

Description

Rare Disease Council and Rare Disease Council Fund; report. Creates the Rare Disease Council for the purpose of (i) advising the Governor and the General Assembly on the needs of individuals with rare diseases in the Commonwealth; (ii) identifying challenges that such individuals face, including delays in obtaining a diagnosis or the receipt of a misdiagnosis, shortages of medical specialists who can provide treatment, and lack of access to therapies and medication used to treat rare diseases; (iii) funding research related to rare diseases and the development of new treatments for rare diseases; and (iv) funding for supports for persons with rare diseases in the Commonwealth. The bill also creates the Rare Disease Council Fund to be used for the purpose of (a) funding research related to rare diseases and the development of new treatments for rare diseases and supports for persons with rare diseases in the Commonwealth and (b) supporting the work of the Rare Disease Council. Read the Bill »

Status

03/24/2021: signed by governor

History