February 2020

Reauthorize the Nation’s Newborn Screening Advisory Committee

[popup_anything id=”80″] Join us in calling on HHS Secretary Alex Azar to act immediately to restart the activities of the ACHDNC so it can continue its critically important work to improve newborn screening and save babies’ lives. Every year, more than 12,000 infants are born with health conditions that are not apparent at birth but

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Survey: Are you 18 years or older, have a rare condition, and live in the U.S.?

What does the current rare disease landscape look like for adults in the US?What are the challenges of living with a rare condition?  In a joint collaboration between the Rare Advocacy Movement (RAM) and THE PLANNING SHOP (TPS), an online survey has been created to uncover answers to these and other rare disease-related questions. The survey will generate data

Survey: Are you 18 years or older, have a rare condition, and live in the U.S.? Read More »

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