Transforming patient support for people living with rare diseases

https://rarerevolutionmagazine.com/transforming-patient-support-for-people-living-with-rare-diseases/ It’s no surprise that the financial burden for those struggling with a rare disease is immense. In fact, according to a study led by the National Institutes of Health’s National Center for Advancing Translational Sciences (NCATS)1, healthcare costs can be as much as three to five times higher for individuals with a rare disease than those without. Outside of the financial burden, patients wrestle with navigating a complex healthcare system, understanding what resources are available and shouldering the weight of the disease resulting in mental health challenges and loss in quality of life.