Up to 50% of babies born with Classical Homocystinuria (HCU) are being missed by the newborn screening (NBS) protocols currently used by most U.S. states. These babies are usually diagnosed years later after symptoms develop, and this delay can have serious health consequences. We at HCU Network America are working to secure newborn screening protocol revisions in states across the U.S. to ensure that babies born with HCU are no longer being missed and can have healthier and happier lives. To this end, we are working with state governments, state newborn screening labs, the federal government, patient advocacy groups, healthcare providers, patients, families, and other stakeholder partners to educate, advocate, and enact change in HCU newborn screening protocols. We won’t stop until all babies born in the U.S. are optimally screened for HCU at birth.

We need your help! Please see the resources below to learn more about this issue and how you can help.