Working Focus Group – Launch Minutes and Goals
Working Focus Group – Launch Minutes and Goals
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Working Focus Group Meeting Schedule
The Working Focus Groups all launched in July, 2020. The WFGs are meeting on an every 4 or every 6 week schedule. All WFGs are open to everyone to listen, learn, and contribute. Please join us. Register to receive meeting invitations. The Working Focus Groups descriptions can be found on the RUSP Nomination
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7 MLD NBS Working Focus Groups Launching in July
European authorities must step up efforts to screen babies for a multitude of genetic disorders, a panel of experts suggested during a May 14-15 online medical conference.
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Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe
European authorities must step up efforts to screen babies for a multitude of genetic disorders, a panel of experts suggested during a May 14-15 online medical conference.
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Program Overview – RUSP Approval & State NBS Implementation
The May 20th, 2020 launch meeting has concluded. We had participants join from Australia to Europe, Canada to Argentina and all across the United States. You may view the video below. Written details of the RANSIP program, organization, EAG member bios, and the Focus Working Groups can be found on the RUSP Nomination page. Register
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MLD NBS Focus Groups and our new logo
We hope you like our new logo. The MLD Expert Advisory Group will be meeting next week. One of the agenda items is to discuss the Focus working groups that have been proposed to support the RUSP Nomination. If you are interested in participating or being kept up to date on one or more of
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ScreenPlus Launch Delayed …
The ScreenPlus Program, the first MLD identified baby newborn screening pilot study in the US, was supposed to launch in May 2020, but the COVID-19 pandemic has put all non-essential research programs in New York hospitals on hold. We expect the delay to be several months, but are uncertain, as of April 2020, as to
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Federal NBS Committee to Resume Work
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
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UK Launches NBS Campaign
The Archangel Newborn Screening Review We urgently need to expand our newborn screening programme in the UK so that our babies are tested and treated early for rare and severe diseases. Our babies are only tested for 9 diseases lagging behind countries such as Poland, Hungary, Portugal, Italy and America. We must do right by
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Implementing MLD Newborn Screening – Complicated but Very Doable
MLD Newborn Screening is very complicated – MLD Foundation has launched and is managing a program to deal with and overcome the challenges. This article is extracted from a poster first presented at WORLDSymposium in Orlando, Florida on February 12, 2020. You can download the poster here. We Have a Working Screen A de-identified
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