Milford Rep. Rose Appointed To Rare Disease Task Force

From the Connecticut General Assembly: State Representative Kim Rose (D-Milford) has been appointed to serve on the Connecticut General Assembly’s Rare Disease Task Force by Public Health Committee Chairman State Representative Jonathan Steinberg (D-Westport).

“I am honored and truly humbled to serve on this task force to continue the work of making recommendations that will lead to the better research and the sharing of information so that we can make improvements to the quality and efficiency, and for patients receive proper diagnosis and treatment,” said Rep. Rose. “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.”

The 16-member task force to study rare diseases was created under Public Act 15-242 and was recently given an extension to meet for another year. The task force is charged with examining rare disease research, diagnoses, treatment and education, as well as making recommendations for the establishment of a permanent group of experts to advise the Department of Public Health (DPH) on rare diseases.

“I am confident that Representative Rose has both the passion and background to be able to effectively assist the task force in developing recommendations that will benefit the rare disease community. She has been a tremendous advocate,” said Rep. Steinberg.

During the legislative session Rep. Kim Rose had introduced House Bill 6009, which would have created a standing Rare Disease Advisory Council. Rare disease affects over 300,000 state residents and accounts for 40% of children's health care costs.

“Representative Rose will be a wonderful addition to the Rare Disease Task Force. There are more than 7,000 rare diseases and she knows that education and raising awareness are the keys to helping Connecticut families that care for rare disease patients and to lower the healthcare costs associated with these unusual illnesses,” said Lesley Bennet, Volunteer with the National Organization for Rare Disorders (NORD).

“The rare disease community is proud to be represented by Kim Rose of Milford. We are excited about her passion and the dedication she will bring to the Rare Disease Task Force. We anticipate that she will be a champion to our community and help us solve the real world issues we face daily,” said Dominic Cotton, advocate and parent of a child with rare disease.

Rep. Rose is serving her fourth legislative term. She is co-chair of the Women’s Caucus, House vice chair of the legislature’s Housing Committee, Assistant Majority Whip and a member of the Internship and Veterans Affairs Committees.

Photo caption: Rep. Rose speaks at a press conference for Rare Disease Day held at the State Captiol Tuesday, February 28, 2017.

Photo courtesy of the Connecticut General Assembly