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Bill > J00100

NY J00100

NY J00100
Memorializing Governor Kathy Hochul to proclaim February 28, 2025, as Rare Disease Day in the State of New York

summary

Introduced
01/09/2025
In Committee
01/14/2025
Crossed Over
Passed
01/14/2025
Dead
Signed/Enacted/Adopted
01/14/2025

Introduced Session

2025-2026 General Assembly

Bill Summary

Memorializing Governor Kathy Hochul to proclaim February 28, 2025, as Rare Disease Day in the State of New York

AI Summary

This resolution seeks to memorialize Governor Kathy Hochul to officially proclaim February 28, 2025, as Rare Disease Day in New York State, raising awareness about rare diseases that affect approximately 1 in 10 New Yorkers. The resolution highlights that there are nearly 10,000 rare diseases, with over 95% lacking FDA-approved treatments, and approximately half of those affected are children. It emphasizes the challenges faced by rare disease patients, including lengthy diagnosis times (6-8 years on average), limited treatment options, and high medical costs. The resolution also underscores the importance of ongoing research, noting recent advances in DNA sequencing and gene-editing techniques that offer hope for potential treatments in various conditions like Sickle Cell Disease, Cancer, and Muscular Dystrophy. By commemorating Rare Disease Day, the resolution aims to increase public awareness, support research efforts, and recognize the struggles of patients and families dealing with rare and often complex medical conditions.

Committee Categories

Budget and Finance

Sponsors (63)

Roxanne Persaud (D)*,  Joe Addabbo (D),  Jake Ashby (R),  Jamaal Bailey (D),  April Baskin (D),  George Borrello (R),  Jabari Brisport (D),  Samra Brouk (D),  Siela Bynoe (D),  Patricia Canzoneri-Fitzpatrick (R),  Stephen Chan (R),  Cordell Cleare (D),  Leroy Comrie (D),  Jeremy Cooney (D),  Patricia Fahy (D),  Simcha Felder (D),  Nathalia Ferna´ndez (D),  Patrick Gallivan (R),  Michael Gianaris (D),  Kristen Gonzalez (D),  Andrew Gounardes (D),  Joe Griffo (R),  Pete Harckham (D),  Pam Helming (R),  Michelle Hinchey (D),  Brad Hoylman (D),  Robert Jackson (D),  Brian Kavanagh (D),  Liz Krueger (D),  Andrew Lanza (R),  John Liu (D),  Monica Martinez (D),  Jack Martins (R),  Mario Mattera (R),  Rachel May (D),  Shelley Mayer (D),  Dean Murray (R),  Zellnor Myrie (D),  Tom O'Mara (R),  Peter Oberacker (R),  Rob Ortt (R),  Tony Palumbo (R),  Kevin Parker (D),  Jessica Ramos (D),  Steve Rhoads (R),  Gustavo Rivera (D),  Rob Rolison (R),  Christopher Ryan (D),  Sean Ryan (D),  Julia Salazar (D),  James Sanders (D),  Jessica Scarcella-Spanton (D),  Luis Sepúlveda (D),  Jose Serrano (D),  James Skoufis (D),  Toby Stavisky (D),  Dan Stec (R),  Andrea Stewart-Cousins (D),  Jim Tedisco (R),  Mark Walczyk (R),  Lea Webb (D),  Bill Weber (R),  Alexis Weik (R), 

Last Action

ADOPTED (on 01/14/2025)

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