NJ AJR19

Designates May 7 of each year as "Cystinosis Awareness Day" in New Jersey to raise public awareness and promote research, advocacy, and fundraising initiatives.

Cystinosis is a rare genetic disorder affecting approximately 2,000 individuals worldwide and 500-600 Americans, causing cystine crystals to accumulate in cells and damage major organs including kidneys, eyes, brain, and liver.

Infantile nephropathic cystinosis accounts for 95% of cases and can cause complete kidney failure by age 10 and premature death if untreated; current treatments have extended life expectancy by 30-40 years.

May 7 was selected to represent the 57-kb deletion, the most common cystinosis mutation among Northern Europeans associated with increased morbidity and mortality.

Requests the Governor to issue an annual proclamation and calls upon State agencies, organizations, and citizens to participate in appropriate awareness activities.