HR 125
Page 1
Date of Hearing: August 20, 2024
ASSEMBLY COMMITTEE ON RULES
Blanca Pacheco, Chair
HR 125 (Blanca Rubio) – As Introduced August 15, 2024
SUBJECT: Aromatic L-Amino Acid Decarboxylase Deficiency Awareness Day.
SUMMARY: Designates October 23, 2024, as Aromatic L-Amino Acid Decarboxylase
Deficiency Awareness Day, and encourages Californians to become better informed about, and
aware of, AADC deficiency. Specifically, this resolution makes the following legislative
findings:
1) Some rare diseases are often severely debilitating, impacting not only the patients but their
families and loved ones, and have no effective treatments. 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. There are more than 6,800 rare diseases.
2) 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.
3) 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.
4) AADC deficiency is a rare genetic neurological disease, and there have been approximately
350 cases of AADC deficiency reported worldwide. Caregivers of patients with AADC
deficiency face many challenges and are often responsible for the overall care of the patient.
5) The Legislature can raise awareness of AADC deficiency in the public and medical
communities.
FISCAL EFFECT: This resolution is keyed non-fiscal by Legislative Counsel.
REGISTERED SUPPORT / OPPOSITION:
Support
None on file
Opposition
None on file
Analysis Prepared by: Michael Erke / RLS. / (916) 319-2800