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HB1995

Rare Disease Council and Rare Disease Council Fund; created, report.

Status:
Passed

Chief Patron:
Kathleen Murphy (D)

Session:
2021 Regular Session

Summary

As Passed House of Origin. 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. (Less)
  • Bill History

  • 01/11/2021 - House: Prefiled and ordered printed; offered 01/13/21 21101216D
  • 01/11/2021 - House: Referred to Committee on Health, Welfare and Institutions
  • 01/18/2021 - House: Impact statement from DPB (HB1995)
  • 01/19/2021 - House: Reported from Health, Welfare and Institutions (20-Y 0-N)
  • 01/19/2021 - House: Referred to Committee on Appropriations
  • 01/19/2021 - House: Assigned App. sub: Health & Human Resources
  • 01/25/2021 - House: House subcommittee amendments and substitutes offered
  • 01/25/2021 - House: Subcommittee recommends reporting with substitute (7-Y 0-N)
  • 01/25/2021 - House: Reported from Appropriations with substitute (22-Y 0-N)
  • 01/25/2021 - House: Committee substitute printed 21103655D-H1
  • 01/26/2021 - House: Read first time
  • 01/26/2021 - House: Impact statement from DPB (HB1995H1)
  • 01/27/2021 - House: Read second time
  • 01/27/2021 - House: Committee substitute agreed to 21103655D-H1
  • 01/27/2021 - House: Engrossed by House - committee substitute HB1995H1
  • 01/28/2021 - House: Read third time and passed House BLOCK VOTE (100-Y 0-N)
  • 01/28/2021 - House: VOTE: Block Vote Passage (100-Y 0-N)
  • 01/29/2021 - Senate: Constitutional reading dispensed
  • 01/29/2021 - Senate: Referred to Committee on Education and Health
  • 02/05/2021 - Senate: Continued to 2021 Sp. Sess. 1 in Education and Health (15-Y 0-N)
  • 02/11/2021 - Senate: Reported from Education and Health (14-Y 0-N)
  • 02/11/2021 - Senate: Rereferred to Finance and Appropriations
  • 02/17/2021 - Senate: Constitutional reading dispensed (39-Y 0-N)
  • 02/17/2021 - Senate: Reported from Finance and Appropriations (16-Y 0-N)
  • 02/18/2021 - Senate: Read third time
  • 02/18/2021 - Senate: Passed Senate (38-Y 0-N)
  • 02/18/2021 - Senate: Reconsideration of Senate passage agreed to by Senate (39-Y 0-N)
  • 02/18/2021 - Senate: Passed Senate (39-Y 0-N)
  • 02/22/2021 - House: Enrolled
  • 02/22/2021 - House: Bill text as passed House and Senate (HB1995ER)
  • 02/22/2021 - House: Impact statement from DPB (HB1995ER)
  • 02/22/2021 - Senate: Signed by President
  • 02/24/2021 - House: Signed by Speaker
  • 02/25/2021 - House: Enrolled Bill communicated to Governor on February 25, 2021
  • 02/25/2021 - Governor: Governor's Action Deadline 11:59 p.m., March 31, 2021
  • 03/24/2021 - Governor: Approved by Governor-Chapter 303 (effective 7/1/21)
  • 03/24/2021 - Governor: Acts of Assembly Chapter text (CHAP0303)