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Florida State Projects
Quick Facts  

Florida

2010 Population:  18,801,310

2012 Yearly Birthrate:  212,954

Total Conditions Screened:  36

Clinics and Centers  

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Legend
Convention Center Convention CenterUniversity University
Laboratory LaboratoryClinic Clinic
Pharmacy PharmacyPublic Health Public Health
Hospital HospitalMedical Food Company Medical Food Company
Consumer Group Consumer Group

Contacts in Florida  
  • Phyllis J. Sloyer PhD, RN
    Title V Contact
  • Ofelia A Alvarez MD
  • Pamela Arn MD
    Medical Geneticist
  • Laura S. Martin MD
    Medical Geneticist
  • Robert Zori MD
    Academic Contact
    Medical Geneticist
  • Helen McCune MS, RD
    Dietitian
    Metabolic Nutritionist
  • Kris-Tena Albers MSN, ARNP
    Title V Contact
  • Dusty Edwards BSN, RN
    Coordinator
    NBS Program Contact
  • Lois Taylor BSN, RN
    New Born Screening Program Director
    Nurse
    Public Health Manager/Director
    Shortterm follow up
  • Bobbie Armstrong
  • Lisa A Brown
  • Seyed Ali Hosseini
  • Melissa Perez
    Consumer Representative
    Family Member
  • Andrew Richardson
    New Born Screening Data System Liaison
  • Pam Tempson
    Early Hearing Detection and Intervention Coordinat
  • News
    Individuals with Sickle Cell Disease or Inherited Metabolic Disorders who have Successfully Transitioned from Pediatric to Adult Care Needed for Online Survey Participation
    Individuals with Sickle Cell Disease or Inherited Metabolic Disorders who have Successfully Transitioned from Pediatric to Adult Care Needed for Online Survey ParticipationResearch OpportunityResearchers with SERC Medical Home & Transitioning Workgroup and SERC Consumer Alliance are are recruiting individuals ages 25-35 (and/or…

    Limestone Life article highlights PKU (Athens, AL)
    Limestone Life article highlights PKU (Athens, AL) Athens, AL based magazine Limestone Life features an article in their latest edition about Adam and Julie Tucker and their…

    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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