Working Focus Group – Launch Minutes and Goals
Working Focus Group – Launch Minutes and Goals
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Announcements
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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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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MLD Newborn Screening website launches!
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