HB 1995

Abstract

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.

Rare Disease Advisory Council; report. Creates the Rare Disease Advisory Council in the executive branchof state government to (i) advise the General Assembly and otheragencies, departments, commissions, and authorities in the Commonwealth on the needs of individuals with rare diseases in the Commonwealth;(ii) explore challenges that such individuals face, including delaysin obtaining a diagnosis or the receipt of a misdiagnosis, shortagesof medical specialists who can provide treatment, and lack of accessto therapies and medication used to treat rare diseases; and (iii)secure funding for research for the development of new treatmentsfor rare diseases and support for persons with rare diseases in theCommonwealth.