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Mashup Score: 0
NORD invites you to share your story. Join the individuals and families who have contributed their personal accounts of living with rare diseases. Alone we are rare. Together we are Read more >
Categories: Latest Headlines, Rare DiseaseTweet
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Mashup Score: 1Galactosemia Expert Perspectives - 2 year(s) ago
Judith L. Fridovich-Keil, PhD, Director, Fridovich-Keil Lab, Professor, Emory University School of Medicine. and Gerald T. Berry, MD, Director of the Metabol…
Source: YouTubeCategories: Hem/Onc News and Journals, Latest HeadlinesTweet
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Mashup Score: 4Galactosemia Expert Perspectives - 2 year(s) ago
Judith L. Fridovich-Keil, PhD, Director, Fridovich-Keil Lab, Professor, Emory University School of Medicine. and Gerald T. Berry, MD, Director of the Metabol…
Source: YouTubeCategories: Latest Headlines, Rare DiseaseTweet
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Mashup Score: 0Testing for CF - 2 year(s) ago
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Source: Cystic Fibrosis FoundationCategories: General Medicine News, Latest HeadlinesTweet
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Mashup Score: 2Testing for CF - 2 year(s) ago
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Source: Cystic Fibrosis FoundationCategories: General Medicine News, Latest HeadlinesTweet
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Mashup Score: 1Newborn Screening: MedlinePlus - 2 year(s) ago
Your newborn infant has screening tests before leaving the hospital. Get the facts about these tests and what you should expect.
Source: medlineplus.govCategories: General Medicine News, Latest HeadlinesTweet
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Mashup Score: 1Newborn Screening: MedlinePlus - 2 year(s) ago
Your newborn infant has screening tests before leaving the hospital. Get the facts about these tests and what you should expect.
Source: medlineplus.govCategories: General Medicine News, Latest HeadlinesTweet
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Mashup Score: 2
Screening for RUSP Conditions NBS programs are regulated and administered at the state level, which allows each program to be customized to fit the state’s specific needs. The federal government also plays a role in administering and adding to the Recommended Uniform Screening Panel (RUSP). The RUSP is a set of recommended conditions for which Read more >
Categories: Latest Headlines, Rare DiseaseTweet
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Mashup Score: 1Galactosemia Expert Perspectives - 2 year(s) ago
Judith L. Fridovich-Keil, PhD, Director, Fridovich-Keil Lab, Professor, Emory University School of Medicine. and Gerald T. Berry, MD, Director of the Metabol…
Source: YouTubeCategories: Hem/Onc News and Journals, Latest HeadlinesTweet
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Mashup Score: 0
Data suggests more than 50% of newborns with Classical Homocystinuria (HCU) are missed by the screening methods used most commonly across the United States Please join HCU Network America on Thursday, September 8 from 2-3 PM ET for a webinar to discuss: -Current newborn screening landscape for Classical Homocystinuria (HCU) -Impacts of delayed diagnosis on patients -Recommended…
Source: Zoom Video CommunicationsCategories: Latest Headlines, Rare DiseaseTweet
A takeaway from the #NORDSummit plenary, "#NewbornScreening and #RareDiseases: An Update and Case Study" is that sharing your story can influence industry decisions. NORD encourages you to share your story with us and the rare community: https://t.co/jq0v3nNq41