Bill > AJR19

Introduced Session

This resolution designates May 7 of each year as "Cystinosis Awareness Day" in New Jersey to raise public awareness and to promote research, advocacy, and fundraising initiatives. Cystinosis is a rare genetic disorder affecting approximately 2,000 individuals worldwide and approximately 500 Americans, including children in New Jersey. Cystinosis causes cystine crystals to accumulate in cells, irreversibly damaging soft tissue and major organs, including the kidneys, eyes, brain, muscles, liver, thyroid, pancreas, testes, and central nervous system. Infantile nephropathic cystinosis, the most common and severe variant, accounts for 95 percent of the total cases. If left untreated, infantile nephropathic cystinosis can cause complete kidney failure by age 10 and premature death. While there is no cure for cystinosis, early detection, initiation of treatment, and compliance with treatment regimens are key to achieving positive outcomes. Cystinosis treatments have improved survival rates, extended life expectancy by 30 to 40 years, and enabled individuals with cystinosis to enjoy a satisfactory quality of life. However, the rarity of the condition and delayed symptom onset in some individuals may impede early detection and access to treatment. In 2018, the Cystinosis Research Network designated May 7 as Cystinosis Awareness Day to raise awareness and garner support through education and fundraising. Joining the Cystinosis Research Network in recognizing May 7 of each year as Cystinosis Awareness Day in New Jersey will amplify efforts to educate New Jersey residents about cystinosis and advance advocacy initiatives aimed at improving health outcomes for individuals living with cystinosis. To that end, May 7 of each year shall be designated as "Cystinosis Awareness Day" in New Jersey. The Governor is requested to issue a proclamation annually to recognize Cystinosis Awareness Day and call upon relevant State agencies, organizations, and citizens of the State to participate in awareness initiatives.

AI Summary

Committee Categories

Michael Venezia (D)*,  Carmen Morales (D),  Verlina Reynolds-Jackson (D),  Gabriel Rodriguez (D), 

Introduced, Referred to Assembly Health Committee (on 01/13/2026)

Official Document