State Rep. Kim Rose (D-Milford) joined activists, parents and those suffering from rare diseases March 1 at Rare Disease Day at the Capitol.
“I am very proud of the work of the task force to date and will continue the important path to proper and timely diagnosis and treatment of rare diseases,” said Rose. “The recommendations we are working on will have a tremendous positive impact on the lives of those that many times face uncertainty as to the outcome of their conditions.”
Rose serves on the Rare Disease Task Force that was created in 2015 to examine research, diagnoses, treatment and education of rare diseases, and make recommendations for the establishment of a permanent group of experts to advise the Department of Public Health.
During the last legislative session Rose had introduced bill that would have created a standing Rare Disease Advisory Council. Rare disease affects over 300,000 state residents and accounts for 40 percent of children’s health care costs.
“I also will continue my work to establish a permanent Rare Disease Advisory Council to serve as a voice for patients and families to further develop legislative recommendations as they are needed,” added Rose.
State Rep. Kim Rose speaks at the State Capitol during Rare Disease Day. Contributed photo.