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Medical Foods Coverage Survey
Medical Foods Coverage Survey  

The Medical Foods Coverage Survey was created to assess the gaps in legislation for coverage of medical foods (formula), modified low-protein foods, and nutraceuticals across the US, as well as other methods of coverage used in each state.  Methods of obtaining these items and detailed statements of exclusions of coverage were also collected. 

This data was initially gathered through phone interviews with state representatives and clinicians and has been summarized in the regional and state summary sheets.

Last Modified: Mar 18, 2011

Medical Foods Surveys - Select a State  
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SERC Highlights
February 2017

Introducing the NBS Connect patient registry!

Introducing the NBS Connect patient registry!

NBS Connect http://nbsconnect.org has been designed as a resource for those affected by certain disorders included in the newborn screening (NBS) panel. Extensive development of the registry will occur via a phased approach. The registry was launched with NBS-PKU Connect for Phenylketonuria, then NBS-MSUD Connect for Maple Syrup Urine Disease. The next phase is now available with. NBS-TYR Connect for Tyrosinemia. Expansion of the registry will continue to include other disorders in the recommended uniform screening panel (RUSP), endorsed by the American College of Medical Genetics (ACMG)

We encourage patients affected with PKU, MSUD and Tyrosinemia to visit the website at www.nbsconnect.org , register and complete their participant profiles. Participants will have access to disorder specific education materials, information on the latest research and clinical trials, recipes, interactive health tracking systems, “Ask an Expert” tools and more. We hope you will take advantage of the resources provided which will empower you to make more informed healthcare decisions.

This registry will be an asset both for forming connections between consumers and for building a qualitative database for future research.

If you have any questions, please email the project manager Yetsa Osara at coordinator@nbsconnect.org.

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