NORD (National Organization for Rare Diseases)
During the two-year debate on healthcare reform that led to the Affordable Care Act, NORD fought long and hard on behalf of rare disease patients and patient organizations for the following insurance reforms, which we considered essential:
elimination of discrimination based on pre-existing medical conditions
elimination of annual and lifetime insurance caps
elimination of the ability of insurers to discontinue coverage for people who received dire diagnoses
a public health insurance option to ensure that everyone could afford coverage
These key issues were all addressed in the Affordable Care Act. At this time, NORD will remain focused on assuring that these critically needed insurance reforms are fully implemented to help Americans affected by rare diseases access desperately needed medical care.