Twenty-one key MLD newborn screening and MLD experts and Key Opinion Leaders gathered over dinner this past Wednesday evening to discuss the launch of the MLD NBS RUSP Nomination and Approval process. A subset of the attendees is being organized into an MLD NBS Expert Working Group to coordinate the actual writing of the RUSP Nomination, including the gathering of existing scientific and policy details needed for the nomination form as well as to identify and fill gaps in existing information.
We Need You – How Can You Get Involved?
There are many aspects of MLD newborn screening and the RUSP nomination that will require extensive involvement of the broader MLD and NBS communities to discuss specific topics and to come to a consensus on key issues.
Click the button below so we can keep you up to date on our progress. You can also let us know if and where you want to be involved with the consensus focus groups as we prepare the nomination over the coming months.
1 thought on “MLD & Newborn Screening Experts Meet to Launch MLD RUSP Nomination”
My son Gavin died of MLD four years ago. Three years ago my husband and I passed The SuperGav Act in Minnesota. This law added three Newborn Screening diseases to Minnesota, ALD, Pompe, and MPS I. We’d like to bring MLD to our state as well.