Prof. Mary Laura Lind (Marylaura Lind Thomas)

We’ll never forget the lives we lost on September 11, 2001. Let’s continue to honor their memories, and the courage of our first responders who put themselves in harm’s way.

The sudden termination of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) by #HHS halts critical progress in adding treatable rare diseases to the Recommended Uniform Screening Panel (#RUSP). This expert committee has played a vital role in ensuring that life-saving diagnoses and treatments are available to all children – regardless of the state they’re born in. Without this expert guidance, progress on the RUSP is now uncertain, including a scheduled May 9 vote to consider adding two treatable rare diseases: #MetachromaticLeukodystrophy (#MLD) and #Duchenne #MuscularDystrophy (#DMD). Together, their inclusion could help save lives and change health outcomes for the better for an estimated 400–450 newborns each year. At #NORD, we’re raising our voice and standing ready to work alongside government leaders to protect and reinstate the vital work of the #ACHDNC. A healthier America begins at birth—with advancements in #NewbornScreening so no child goes undiagnosed, and no family faces the devastation of a treatable #RareDisease that could have been caught early. nbcnews.com/health/health-ne…