NORD has increased its involvement in state-based policy matters in order to ensure that patients are able to access the treatments the rare community has fought so hard to get developed and approved. NORD recognizes that now more than ever, the cost and availability of health care services for patients with a rare disease is dependent upon state-based policy decisions.

This is welcomed news, as it means national goals are closer to benefiting patients at the local level. However, it also means that the rare community is increasingly dependent on the earnestness with which their state implements better policies.