IMPORTANT!!!!!!!  SEE BELOW!!!!!!!!

Lori Williamson, MS, CGC

-----Original Message-----
From: [nsgc-list] Sylvia Au [mailto:[log in to unmask]] 
Sent: Saturday, April 26, 2008 6:32 PM
To: Williamson, Lori L. (HSC)
Subject: S 1858 - Newborn Screening Saves Lives Bill is signed by the
President

I didn't see anyone mention that the NBS Saves Lives Bill was signed by 
the President on April 24.  Of particular interest to counselors is 
Section 2:

"Amends the Public Health Service Act to authorize the Secretary of 
Health and Human Services, acting through the Administrator of the 
Health Resources and Services Administration (HRSA), to award grants to 
eligible entities to: (1) provide screening, counseling, or health care 
services to newborns and children having or at risk for heritable 
disorders; (2) provide education and training in newborn screening and 
congenital, genetic, and metabolic disorders to health care 
professionals and newborn screening laboratory personnel; (3) develop 
and deliver educational programs about newborn screening, counseling, 
testing, follow-up, treatment, and specialty services to parents, 
families, and patient advocacy and support groups; and (4) establish, 
maintain, and operate a system to assess and coordinate treatment 
relating to congenital, genetic, and metabolic disorders."

Of course Congress will still need to appropriate funding for the bill. 
When this happens there should be some federal funding made available 
for services to make sure families who have children with disorders 
identified via NBS will have genetic counseling and follow-up services.

You can get more information about the bill at 
http://www.govtrack.us/congress/bill.xpd?tab=summary&bill=s110-1858.

-- 
Sylvia M. Au, M.S., C.G.C.
State Genetics Coordinator
Hawaii Department of Health

741 Sunset Avenue
Honolulu, HI  96816
(808) 733-9063
(808) 733-9068 fax
[log in to unmask]
www.hawaiigenetics.org

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