Assembly designates Feb. 28 as Rare Disease Day, highlights patient advocates and insurance barriers

The California State Assembly adopted Assembly Concurrent Resolution 132 on Jan. 20, 2026, designating Feb. 28 as Rare Disease Day and highlighting challenges faced by people with rare conditions.

Assemblymember Dixon, vice chair of the Rare Disease Caucus and sponsor of the measure, explained that a rare disease is defined as affecting fewer than 200,000 people in the United States and cited estimates that collectively roughly one in 10 Americans lives with a rare disease. “A rare disease is a condition that affects fewer than 200,000 people in The United States,” Dixon said on the floor, and she asked members to observe Feb. 28 to raise awareness and support for affected families.

Speakers from the Rare Disease Caucus and supporters recounted long waits for diagnosis, frequent insurance denials and the high cost or scarcity of approved treatments. The chair of the California Rare Disease Caucus described personal family experiences with ALS and denied treatment coverage that left patients without access to off-label but clinically recommended therapies. Members urged continued investment in research, expanded coverage and bipartisan action to support patients.

Dixon also introduced patient advocates, caregivers and medical professionals present in the gallery by name, thanking organizations including California Life Sciences for supporting Rare Disease Week. The clerk opened the first roll for coauthors and reported 71 coauthors added; the Assembly then took a voice vote and adopted ACR 132.

Members emphasized that while the resolution is ceremonial, it aims to sustain legislative attention on access to diagnosis, coverage and research funding for rare-disease patients in California. The Assembly adjourned after memorial tributes and committee announcements later in the day.