Republican State Senator Jeremy Miller of Winona has introduced a bill that would create a rare disease advisory council in Minnesota. Miller says “the goal of creating this advisory council is to gather experts from across medical fields and have them come together and use their knowledge and expertise to provide advice, research, diagnoses and treatments related to rare diseases.” The “Chloe Barnes Rare Disease Advisory Council” would be named after two-year-old Chloe Barnes, who passed away in 2010 from a rare degenerative disease. Chloe’s mom Erica says it would be a big help to patients and their families and adds that “all the scientific advancement in the world is meaningless if individual patients cannot access it. One of the biggest barriers to rare patient care is being able to bring the rare disease communities together. Only 15% of rare patient populations have a disease-specific organization.” Barnes says “the exciting news is that the future for rare diseases is bright, in the last several years, strides in diagnostics and genetic research has opened the door to possible treatments that would’ve been considered science fiction just a generation ago.” The council would be formed within the University of Minnesota and would advise state agencies and provide resources and education to the public. Around one in 10 Americans have a rare disease–and half are children.