Section 6D: Advisory committee for persons with genetic disabilities; investigation and study; rules and regulations
320 words·~1 min read·
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Section 6D. There is hereby established within the department an advisory committee for genetically handicapped persons, hereinafter referred to as the committee. The committee shall be composed of six members to be appointed by the commissioner, one of whom shall be a geneticist, two of whom shall be medical specialists, at least one of whom shall be a neurologist involved in the medical treatment of individuals afflicted with inherited neurological degenerative diseases in persons of Portuguese ancestry, and three of whom shall be members of the general public.
Each member shall hold office for a term of four years and until his successor is appointed and qualified. The members of the committee shall serve without compensation but shall be reimbursed for actual expenses incurred in carrying out their official duties.
The department shall, with the advice and recommendations of the committee, make an investigation and study into heredo-familial neuronal degenerative diseases including, but not limited to, autosomal dominant motor system diseases in persons of Portuguese ancestry variously known as Machado's Disease, Joseph's Disease, Azorean Disease, Machado–Joseph's Disease or spino-nigro-dentatal degeneration, Huntington's Chorea, Friedreich's Ataxia and similar disorders. Said investigation and study shall be conducted for the purposes of establishing and administering a program for the medical care, treatment and counseling of genetically handicapped persons afflicted with the said medical problems.
The department shall adopt rules and regulations for the establishment of a medical program for those afflicted with Machado's Disease, Joseph's Disease, Azorean Disease, Machado's–Joseph's Disease, spino-nigro-dentatal degeneration, Huntington's Chorea and Friedreich's Ataxia and all other heredo-familial neuronal degenerations for the purpose of providing access to educational, social, and medical support services, including, but not limited to, transportation, emergency financial assistance, home nursing care, family and genetic counseling to those at risk or to those afflicted, financial assistance to those attending clinics and related medical expenses including prescription drugs, wheelchairs and communication devices which serve to aid those so afflicted.