HB576

I am a neurologist at DH in Lebanon and on the NH Rare Disease Council who takes care of the majority of ALS patients in NH, We very much need an ALS reportable registry. MA, VT, ME and CA now have them. Registries are a way to track diseases and better understand the etiology of diseases. Cancer and infectious disease registries already exist. They make a huge difference in the realm of public health and epidemiology. It also helps patients directly by finding them help such as care for veterans with ALS through the VA Administration and help finding multidisciplinary ALS Clinics and benefits that they might be entitled to, ALS is considered a rare disease, but I see a lot of it in my clinics (approximately 60 new cases a year). Data suggests that NH is a state at the top of the list for incidence of the disease, It is a devastating disease both for the patients and their families, The State of NH owes such a registry to its residents. Unfortunately, all good things involve investment in funds. Prior attempts of getting a reportable registry in NH were met with financial worries by the Legislature and DH, I am optimistic that the costs could be kept relatively low, Vermont serves as a model and could be queried on how they are managing financially. I do very much appreciate anything the NH Legislature can do to help find a cure for this horrible disease,