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
HB237 has been signed law establishing the NH Rare Disease Advisory Council! The council met for the first time on September 23, 2019 and continues to meet regularly. If anyone has questions or has an issue they would like addressed by the Council, please send us a comment through this website or our Facebook page. The meetings are open to the public.
In general, 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. Recent advocacy efforts have focused on affordable prescription medications and paid family medical leave. Contact us if you want to get involved!