The NH RDA watches current legislation before the NH Senate and House of Representatives to identify any issues of interest to the rare disorder community. We inform the public about these bills and assist them in supporting or opposing bills as appropriate. Furthermore, we are working to develop relationships with our representatives so that they are proactive in developing legislation with the rare disease community in mind. We will periodically provide community advocacy workshops so watch for upcoming events or sign up below to receive updates.
Current Legislative Activity
IT PASSED NH HOUSE and SENATE!!! We have been working with Rep. Bill Marsh on HB237 to establish a NH Rare Disease Advisory Council. The council will include medical providers, hospital and health insurance representatives, rare disease patients and caregivers, and current legislators who will review available data regarding rare diseases in NH and make recommendations to the legislature about changes to increase knowledge of these disorders and improve quality of life for patients and families. Just waiting for the Governor to sign it into law!!
We align ourselves with the policies of the National Organization for Rare Disorders but stay connected with our local and state community to ensure that we are advocating for the best interests of NH citizens with rare disorders.