Rhode Island Rare Disease Community will testify tomorrow at RI StateHouse

MEDIA ADVISORYFor Immediate ReleaseJanuary 29, 2014Contact: Patricia Weltin401-434-0052Patients to share personal stories of rare disease quality of life issues intestimony on legislation that would establish a rare disease advisory council toprovide support, resource coordination and health coverage related disparities.On January 29, 2014, several members of the Rhode Island Rare Disease Communitywill testify in support of legislation that will provide them access to coordinatedresources, state-of-the-art information on rare disease education, treatment and accessto care. This council will serve as a consensus group designed to coordinate efforts instate resources, private entities and social services. There are approximately 120,000people living in Rhode Island with a rare disease. Through their personal stories,patients will explain to lawmakers the critical need for a rare disease advisory council.The House Health, Education & Welfare Committee will be hearing testimony onH 7094:“ An Act relative to rare disease community support, resource coordination and quality oflife” sponsored by Representatives Kazarian, Amore, Slater, Diaz and O’Brien, isintended to improve access to coordination of state resources, provide support andimprove quality of life for people in Rhode Island living with a rare disease.WHAT: Patient testimony - H 7094WHEN: Wednesday, January 30, 2014WHERE: Rhode Island State House - RM 135**Note: Patients will be available following testimony to speak to reporters.###