Your Voice Mattered!
Your phone calls, emails, and signing of the petition worked. HHS Secretary Azar has re-authorized the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) as a discretionary advisory committee. That means the committee can resume their work after a 6 month hiatus and cancelling two of their meetings.
HHS indicated they will provide information about upcoming meetings, including their previously scheduled May meeting, at a later date. One of the key delayed presentations is that of recommendations for potential changes in the process and requirmeents for new RUSP nominations.
What does this mean for MLD?
As you are probably aware, MLD Foundation formally launched a multi-stakeholder multi-year collaborative project to prepare and achieve a RUSP Nomination in February (2020). A functioning and active ACHDNC is critical in terms of knowing any changes they might make to the process and the continued review of nominations that might precede MLD so there is no backlog when we submit our nomination.