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People with rare diseases know that the right government policies can make a big difference in the quality of their own lives, and those of their caregivers. But most lawmakers aren’t experts in even one well-known disease — let alone the world’s estimated 7,000 rare disorders. So how does the…

In a newly published set of guidelines, experts give suggestions for the management of some of the behavioral symptoms of Huntington’s disease. By making these guidelines available to both specialists and non-specialists, the hope is that better care and support can be given more consistently to Huntington’s patients and their…

RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims to help patient advocacy groups with limited resources build their own disease registries. The site was developed by the National Center for Advancing Translational Sciences (NCATS), a division of the National Institutes of…