A heartfelt THANK YOU to all who reached out to their congressional representatives asking for them to support our most recent appropriations request. This is the most support we have ever received to a Dear Colleague letter (see image above).
Continue reading for more information about the Dear Colleague letter, the RUSP, and advocacy resources...
The Recommended Uniform Screening Panel (RUSP) is a list of disorders that the Secretary of the Department of Health and Human Services (HHS) recommends for states to screen as part of their state universal newborn screening programs.
Disorders on the RUSP are chosen based on evidence that supports the potential net benefit of screening, the ability of states to screen for the disorder, and the availability of effective treatments. It is recommended that every newborn be screened for all disorders on the RUSP.
ALD, GAMT, MPS I, MPS II, Pompe & SMA are all RUSP conditions that are NOT being implemented in every state.
Our goal is to ensure that every state has the funding it needs so that each state newborn screening lab is capable of testing its babies for ALL RUSP approved conditions.
In other words, eradicate “death by zip code.”
Please use our one pagers when advocating for newborn screening for the following RUSP conditions:
ALD:
ald2022onepager.pdf
MPS I:
mpsi2022onepager.pdf
Pompe:
pompe2022onepager.pdf
SMA:
sma2022onepager.pdf
ALD:
ald2022onepager.pdf
MPS I:
mpsi2022onepager.pdf
Pompe:
pompe2022onepager.pdf
SMA:
sma2022onepager.pdf
Thank you to Congressman Lee Zeldin and Congresswoman Yvette Clarke for sending Dear Colleague letters in 2020 and 2021 for this important request.
We are forever grateful for this support in New York, where screening for ALD first started.
And thank you to all of our congressional representatives who have supported this appropriations request in the past (photos below). We hope that you will sign on once again to help screen babies and save lives.
We are forever grateful for this support in New York, where screening for ALD first started.
And thank you to all of our congressional representatives who have supported this appropriations request in the past (photos below). We hope that you will sign on once again to help screen babies and save lives.
