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Delaware’s bill passage for rare disease advisory council applauded

Delaware’s lieutenant governor, Bethany Hall-Long, PhD, is applauding the passage in the state House of Representatives of a measure that would create the state’s first Rare Disease Advisory Council (RDAC). The legislation would establish an advisory body for state residents who have a rare disease, such as Lambert-Eaton myasthenic…

New Maryland council to help guide legislature on rare diseases

Legislators in Maryland have officially established a Rare Disease Advisory Council (RDAC) in the state. The new council will bring together stakeholders from the community of people with rare diseases such as Lambert-Eaton myasthenic syndrome (LEMS), including patients, caregivers, scientists, and healthcare providers. The council will serve to educate…

NORD adds 9 new rare disease centers to its US network

The National Organization for Rare Disorders (NORD) has selected nine new Rare Disease Centers of Excellence, bringing to 40 the total number of medical centers that are part of its network. This unique network of medical centers, clinics, and institutes seeks to expand access to multi-specialty care for…