Minnesota Senate Media Services
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Creating a Council on Rare Diseases
Posted
February 18, 2019
Views
45
February 18, 2019
45
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19:19Now PlayingAt a State Capitol news conference Monday, February 18, Senator Jeremy Miller, R-Winona, featured a proposal that would create a Council on Rare Diseases at the University of Minnesota. The council would be charged with identifying the best approach to diagnose and treat rare diseases.
Named after Chloe Barnes, who died at age two of metachromatic leukodystrophy, the council would partner with legislators and other public officials to provide expertise on provider-patient relationships, life-saving medications and new, applicable technologies.
Abbey Hauser, who has been diagnosed with a genetic connective tissue disorder, called Classical Ehlers-Danlos Syndrom, said, "...as a rare disease patient, although we all have different diagnosis, we all face very similar issues with insurance or health care, and because of this one council, that covers all rare diseases as a generic topic, will help so many more patients and it will make us not as rare as we seem."
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