News     Calendar    Donate Facebook Badge_Light GreyTwitter Badge_Light GreyInstagram Badge_Light GreyYoutube Badge_Light Grey  
  Green Line_Homepage

Newborn Screening - State and Federal Information

California Testimony Video_SB 224

Hunter's Hope advocates screening for six disorders called Lysosomal Storage Disorders (LSDs) in states across the U.S. - Krabbe, Pompe, Gaucher, Niemann-Pick, Fabry and Hurler Syndrome.

These disorders can be cost-effectively screened together and must be diagnosed early to save children's lives. Therefore, it is critical all infants are screened for LSDs at birth.

Currently, New York and Missouri are the only states screening for Krabbe Disease at birth.  Illinois, New Mexico, New Jersey, Pennsylvania, Kentucky and Ohio have passed legislation to add LSDs to their newborn screening panels with implementation dates varying by state.

Find out what's happening in your state on our Take Action page.

In addition to the Lysosomal Storage Disorders noted above, we advocate screening for all treatable diseases.  To find out what conditions your state screens for, visit Baby's First Test, the nation's Newborn Screening Clearinghouse.

Federal Newborn Screening Activities

Although each state determines which diseases to include in its newborn screening program, important funding, research and recommendations are made through various federal agencies.

Hunter's Hope is actively involved in several of these national newborn screening efforts.  We serve on the Standing Committee and Bioethics Committee of the Newborn Screening Translational Research Network (NBSTRN). 

Through our active involvement in both state and federal newborn screening efforts, Hunter's Hope is working hard to ensure Krabbe Newborn Screening is a reality nationwide.

 HH Logo and Type_Vertical_Grey Background

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to
give you hope and a future." 
Jeremiah 29:11 


About Us

Kelly Family Story
Hunter's Hope Team

HJKRI Clinical Center
HJKRI Basic Science Center
Extramaural Research
Medical & Science Symposium
Research Publications
Historical Research


Krabbe and Leukodystrophies

About Krabbe
About Leukodystrophies

Newborn Screening
What is NBS?
Krabbe NBS
State and Federal Info
Take Action
Families Taking Action
Supplemental NBS
Why NBS?


Family Care

Wall of Fame
Affected Family Registration
Hope for Life
Family & Medical Symposium
Hunter's Homes
Equipment & Supply Exchange
Hunter's Wish Gift
Kaden's Kisses


Get Involved

Jim Kelly's Every Score
Jill Kelly's Every Sister
Every Step Walk
Special Events & Campaigns
Hunter's Day of Hope & Prayer for Children
Strategic Partners




  6368 West Quaker Street, PO Box 643, Orchard Park, NY 14127 |  (716) 667-1200