| R 408 |
| 2015 -- H 5297 SUBSTITUTE A Enacted 06/18/2015 |
| H O U S E R E S O L U T I O N |
| CREATING A SPECIAL LEGISLATIVE COMMISSION TO STUDY THE CREATION OF A COUNCIL TO COORDINATE RESOURCES FOR PROVIDING CARE TO INDIVIDUALS WITH RARE DISEASES |
| Introduced By: Representatives Kazarian, and Amore |
| Date Introduced: February 04, 2015 |
| RESOLVED, That a special legislative commission be and the same is hereby created |
| consisting of nine (9) members: three (3) of whom shall be members of the Rhode Island House |
| of Representatives, not more than two (2) from the same political party, to be appointed by the |
| Speaker of the House; one of whom shall be the Director of the Rhode Island Department of |
| Health, or designee; one of whom shall be the Executive Director of the Rhode Island Hospital |
| Association, or designee; one of whom shall be an individual diagnosed with a rare disease, to be |
| appointed by the Speaker of the House; one of whom shall be a caregiver of an individual |
| diagnosed with a rare disease, to be appointed by the Speaker of the House; one of whom shall be |
| the Associate Dean of Medicine for Public Health and Policy at the Alpert Medical School at |
| Brown University, or designee; and one of whom shall be the President of the Rhode Island |
| Public Health Association, or designee. |
| In lieu of any appointment of a member of the legislature to a permanent advisory |
| commission, a legislative study commission, or any commission created by a General Assembly |
| resolution, the appointing authority may appoint a member of the general public to serve in lieu |
| of a legislator, provided that the Majority Leader or the Minority Leader of the political party |
| which is entitled to the appointment, consents to the member of the general public. |
| The purpose of said commission shall be to make a comprehensive study and proffer |
| recommendations for coordinating the efforts of state resources, private entities, and social |
| services in order to efficiently provide care for Rhode Islanders living with rare diseases and their |
| caregivers. |
| Forthwith upon passage of this resolution, the members of the commission shall meet at |
| the call of the Speaker of the House and organize and shall select a chairperson. |
| Vacancies in said commission shall be filled in like manner as the original appointment. |
| The membership of said commission shall receive no compensation for their services. |
| All departments and agencies of the state shall furnish such advice and information, |
| documentary and otherwise, to said commission and its agents as is deemed necessary or |
| desirable by the commission to facilitate the purposes of this resolution. |
| The Speaker of the House is hereby authorized and directed to provide suitable quarters |
| for said commission; and be it further |
| RESOLVED, That the commission shall report its findings and recommendations to the |
| House of Representatives no later than March 24, 2016, and said commission shall expire on June |
| 24, 2016. |
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| LC000901/SUB A |
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