Rare Disease Council and Rare Disease Council Fund; created, report.
Summary
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.
Bill status
signed
all 5 stages cleared
Introduction
Jan 2021
Committee Review
Feb 2021
House of Delegates Passage
Jan 2021
Senate Passage
Feb 2021
Signed into Law
Mar 2021
Introduced Jan 11, 2021
Signed Mar 24, 2021
Floor votes · Senate Feb 17, 2021 · House of Delegates Jan 28, 2021
How they voted
33–0
Passed
Total votes 33
Feb 17, 2021
D
Democratic17
100% Yea
R
Republican16
100% Yea
Vote distribution
All Yea
All Nay
Mixed
No data
Full legislative history
Actions timeline
Total actions
36
Key actions
13
Committee
13
Mar 24, 2021
Signed into law
Approved by Governor-Chapter 303 (effective 7/1/21)
executive
Feb 18, 2021
Upper · Passed
Passed Senate (39-Y 0-N)
upper
Feb 18, 2021
Upper · Passed
Passed Senate (38-Y 0-N)
upper
Feb 17, 2021
Upper · Passed
Reported from Finance and Appropriations (16-Y 0-N)
upper
Feb 17, 2021
Senate · Passed
Senate Vote: pass (33-0)
senate
Feb 11, 2021
Committee
Rereferred to Finance and Appropriations
upper
Feb 11, 2021
Upper · Passed
Reported from Education and Health (14-Y 0-N)
upper
Jan 29, 2021
Committee
Referred to Committee on Education and Health
upper
Jan 28, 2021
Lower · Passed
Read third time and passed House BLOCK VOTE (100-Y 0-N)
lower
Jan 27, 2021
Lower · Passed
Engrossed by House - committee substitute HB1995H1
lower
Jan 27, 2021
Lower · Passed
Committee substitute agreed to 21103655D-H1
lower
Jan 25, 2021
Lower · Passed
Reported from Appropriations with substitute (22-Y 0-N)
lower
Jan 25, 2021
Lower · Passed
Subcommittee recommends reporting with substitute (7-Y 0-N)
lower
Jan 25, 2021
Lower · Passed
House subcommittee amendments and substitutes offered
lower
Jan 19, 2021
Committee
Assigned App. sub: Health & Human Resources
lower
Jan 19, 2021
Committee
Referred to Committee on Appropriations
lower
Jan 19, 2021
Lower · Passed
Reported from Health, Welfare and Institutions (20-Y 0-N)
lower
Jan 11, 2021
Committee
Referred to Committee on Health, Welfare and Institutions
lower
Jan 11, 2021
Introduced
Prefiled and ordered printed; offered 01/13/21 21101216D
lower
1 primary · 11 co-sponsors
Sponsors
Role
Legislator
Party
State
District
P
Kathleen Murphy
DDemocratic
Co
Danica Roem
DDemocratic
Co
David Reid
DDemocratic
Co
Dawn Adams
DDemocratic
Co
Ken Plum
DDemocratic
Co
Lee J. Carter
DDemocratic
Co
Marcus Simon
DDemocratic
Co
Mark H. Levine
DDemocratic
Co
Mark L. Keam
DDemocratic
Co
Patrick Hope
DDemocratic
Co
Shelly Simonds
DDemocratic
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