summary
Introduced
02/14/2025
02/14/2025
In Committee
02/26/2025
02/26/2025
Crossed Over
02/24/2025
02/24/2025
Passed
03/13/2025
03/13/2025
Dead
Signed/Enacted/Adopted
03/18/2025
03/18/2025
Introduced Session
2025-2026 Regular Session
Bill Summary
This measure would designate February 28, 2025, as Rare Disease Day and, with respect to rare diseases and disorders, would recognize the importance of improving awareness, encouraging accurate and early diagnosis, and supporting national and global efforts to develop effective treatments, diagnostics, and cures.
AI Summary
This resolution designates February 28, 2025, as Rare Disease Day, highlighting the significant challenges faced by individuals with rare diseases, which are defined as conditions affecting fewer than 200,000 individuals in the United States. The resolution acknowledges that over 30 million Americans live with at least one of more than 10,000 known rare diseases, with many of these conditions being serious and life-threatening, particularly among children. It recognizes important milestones such as the 42nd anniversary of the Orphan Drug Act, the FDA's Accelerating Rare disease Cures Program, and California's establishment of the Jacqueline Marie Zbur Rare Disease Advisory Council. The resolution emphasizes that while the FDA has approved over 1,100 drugs for rare disease treatments, approximately 90 percent of rare diseases still lack approved treatments. By designating this day, the resolution aims to improve awareness, encourage early and accurate diagnosis, and support national and global efforts to develop effective treatments, diagnostics, and cures for rare diseases, while also recognizing the challenges patients and families face in obtaining proper medical care and financing life-altering treatments.
Sponsors (71)
Diane Dixon (R)*,
Rick Zbur (D)*,
Dawn Addis (D),
Cecilia Aguiar-Curry (D),
Patrick Ahrens (D),
Juan Alanis (R),
Joaquin Arambula (D),
Rebecca Bauer-Kahan (D),
Steve Bennett (D),
Marc Berman (D),
Catherine Blakespear (D),
Tasha Boerner Horvath (D),
Mia Bonta (D),
Lisa Calderon (D),
Jessica Caloza (D),
Leticia Castillo (R),
Phillip Chen (R),
Damon Connolly (D),
Laurie Davies (R),
Carl DeMaio (R),
Sade Elhawary (D),
Heath Flora (R),
Mike Fong (D),
Jesse Gabriel (D),
James Gallagher (R),
Robert Garcia (D),
Mike Gipson (D),
Jeff Gonzalez (R),
Mark González (D),
Heather Hadwick (R),
Matt Haney (D),
John Harabedian (D),
Gregg Hart (D),
Josh Hoover (R),
Jacqui Irwin (D),
Corey Jackson (D),
Ash Kalra (D),
Tom Lackey (R),
Alex Lee (D),
Josh Lowenthal (D),
Alexandra Macedo (R),
Tina McKinnor (D),
Stephanie Nguyen (D),
Liz Ortega (D),
Blanca Pacheco (D),
Diane Papan (D),
Darshana Patel (D),
Joe Patterson (R),
Gail Pellerin (D),
Cottie Petrie-Norris (D),
Sharon Quirk-Silva (D),
James Ramos (D),
Rhodesia Ransom (D),
Robert Rivas (D),
Celeste Rodriguez (D),
Michelle Rodriguez (D),
Chris Rogers (D),
Blanca Rubio (D),
Kate Sanchez (R),
Pilar Schiavo (D),
Nick Schultz (D),
LaShae Sharp-Collins (D),
Esmeralda Soria (D),
Catherine Stefani (D),
Tri Ta (R),
David Tangipa (R),
Avelino Valencia (D),
Greg Wallis (R),
Chris Ward (D),
Buffy Wicks (D),
Lori Wilson (D),
Last Action
Chaptered by Secretary of State - Res. Chapter 25, Statutes of 2025. (on 03/18/2025)
bill text
bill summary
Loading...
bill summary
Loading...
bill summary
Loading...