Assembly Bill A5762

Signed By Governor
2019-2020 Legislative Session

Relates to establishing the rare disease advisory council

download bill text pdf

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Archive: Last Bill Status - Signed by Governor


  • Introduced
    • In Committee Assembly
    • In Committee Senate
    • On Floor Calendar Assembly
    • On Floor Calendar Senate
    • Passed Assembly
    • Passed Senate
  • Delivered to Governor
  • Signed By Governor

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2019-A5762 (ACTIVE) - Details

See Senate Version of this Bill:
S4497
Law Section:
Public Health Law
Laws Affected:
Add Art 27-L §2799-u, Pub Health L

2019-A5762 (ACTIVE) - Summary

Establishes the rare disease advisory council; advise and consult on policy matters relating to rare disease; twenty-one appointed members.

2019-A5762 (ACTIVE) - Bill Text download pdf

                            
 
                     S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   5762
 
                        2019-2020 Regular Sessions
 
                           I N  A S S E M B L Y
 
                             February 19, 2019
                                ___________
 
 Introduced  by  M.  of  A.  PAULIN,  SAYEGH, ENGLEBRIGHT, GRIFFIN, FAHY,
   SIMON, BARCLAY, CROUCH, DeSTEFANO, JACOBSON, SCHMITT -- read once  and
   referred to the Committee on Health
 
 AN  ACT  to amend the public health law, in relation to establishing the
   rare disease advisory council

   THE PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND  ASSEM-
 BLY, DO ENACT AS FOLLOWS:
 
   Section  1.  The  public health law is amended by adding a new article
 27-L to read as follows:
                               ARTICLE 27-L
                       RARE DISEASE ADVISORY COUNCIL
 SECTION 2799-U. RARE DISEASE ADVISORY COUNCIL.
   § 2799-U. RARE DISEASE ADVISORY COUNCIL. 1. THERE SHALL BE ESTABLISHED
 WITHIN THE DEPARTMENT A RARE DISEASE  ADVISORY  COUNCIL  TO  ADVISE  AND
 CONSULT  ON POLICY MATTERS RELATING TO RARE DISEASE. FOR THE PURPOSES OF
 THIS SECTION, RARE DISEASE SHALL MEAN  ANY  DISEASE  OR  CONDITION  THAT
 AFFECTS LESS THAN 200,000 PEOPLE IN THE UNITED STATES.
   2.  THE COUNCIL SHALL BE COMPOSED OF TWENTY-ONE MEMBERS CONSISTING OF:
 SEVENTEEN MEMBERS SHALL BE APPOINTED BY THE GOVERNOR, TWO MEMBERS  SHALL
 BE  APPOINTED  BY  THE SPEAKER OF THE ASSEMBLY, AND TWO MEMBERS SHALL BE
 APPOINTED BY THE TEMPORARY PRESIDENT OF THE SENATE. THE  GOVERNOR  SHALL
 DESIGNATE  THE  COMMISSIONER,  OR  HIS  OR HER DESIGNEE, AS CHAIR OF THE
 COUNCIL, AND THE SUPERINTENDENT OF THE DEPARTMENT OF FINANCIAL SERVICES,
 OR HIS OR HER DESIGNEE, AS CO-CHAIR OF THE COUNCIL. THE COUNCIL SHALL AT
 ALL TIMES INCLUDE IN  ITS  MEMBERSHIP  THE  FOLLOWING,  WHICH  SHALL  BE
 APPOINTED BY THE GOVERNOR: TWO PHYSICIANS LICENSED AND PRACTICING IN THE
 STATE   WITH   EXPERIENCE  RESEARCHING,  DIAGNOSING,  OR  TREATING  RARE
 DISEASES; ONE REGISTERED NURSE OR  ADVANCED  PRACTICE  REGISTERED  NURSE
 LICENSED  AND  PRACTICING  IN  THE  STATE  WITH EXPERIENCE TREATING RARE
 DISEASES; TWO HOSPITAL ADMINISTRATORS FROM HOSPITALS IN THE  STATE  THAT
 PROVIDE  CARE TO PERSONS DIAGNOSED WITH A RARE DISEASE, ONE OF WHOM MUST
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
              

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