WHEREAS, A rare disease is generally considered to be a disease that affects fewer than 200,000 people in the United States at any given time; and

WHEREAS, There are more than 6,800 rare diseases. Altogether, rare diseases affect an estimated 25,000,000 to 30,000,000, inclusive, Americans; and

WHEREAS, Some rare diseases are often severely debilitating, impacting not only the patients but their families and loved ones, and have no effective treatments; and

WHEREAS, Aromatic l-amino acid decarboxylase (AADC) deficiency is a life-limiting, severely debilitating genetic neurologic condition that significantly impacts a patient’s development, motor skills, growth, and cognitive and language skills; and

WHEREAS, AADC deficiency results from an inherited genetic disease where patients lack the AADC enzyme that is required to create dopamine. Without dopamine, patients will never achieve motor milestones like holding their heads up, sitting, or standing, develop the ability to communicate, or perform the most basic of life’s needs. Patients are diagnosed through genetic and other biochemical tests; and

WHEREAS, Patients suffering from AADC deficiency often have low muscle tone that is unexplained and not improving. There are also other symptoms, such as developmental delays and involuntary eye movements; and

WHEREAS, AADC deficiency is a rare genetic neurological disease, and there have been approximately 350 cases of AADC Deficiency reported worldwide; and

WHEREAS, Caregivers of patients with AADC deficiency face many challenges and are often responsible for the overall care of the patient; and

WHEREAS, The Legislature can raise awareness of AADC deficiency in the public and medical communities; now, therefore, be it