Rare Disease Day At The Capitol

March 1, 2018

I joined activists, parents and those suffering from rare diseases at Rare Disease Day at the Capitol. I serve on the Rare Disease Task Force that was created under Public Act 15-242.

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. 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.

During the last legislative session, I introduced bill to create a standing Rare Disease Advisory Council. Rare disease affects over 300,000 state residents and accounts for 40% of children's health care costs.

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 on rare diseases.

I 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.