Hunter's Hope
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      • Celebrating Hunter’s Life
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  • + DONATE
  • Hope ~ Life
    • Wall of Fame for Children
    • Hunter’s Day of Hope & Prayer for Children
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    • Without a Word
    • Prayers of Hope
    • Wonderful Bear
  • Leukodystrophy
    • Leukodystrophies
      • Leukodystrophy Types
      • ALD
      • Alexander Disease
      • Krabbe Disease
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    • Leukodystrophy Care Network (LCN)
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    • Newborn Screening
      • What is Newborn Screening?
      • Krabbe Disease Screening
      • Take Action
      • Supplemental Newborn Screening
    • 2020 Global Virtual Leukodystrophy Symposium
  • Get Involved
    • Hunter’s Hero
    • Jim Kelly Tailgate
    • Jim Kelly’s NFL Draft Party
    • Jim Kelly – The Glory Years
    • Special Fundraisers
    • Strategic Partners
    • Volunteer
  • Shop for Hope
    • Supplemental Newborn Screening
    • Bears – Collectible, Limited Edition
    • Hunter’s Hero
    • Kelly Family Books
    • “Light Your Heart With Hope”
    • Kelly Tough Gear
    • h.b.
Donate
  • Hope ~ Life
    • Wall of Fame for Children
    • Hunter’s Day of Hope & Prayer for Children
    • World Day of Hope and Prayer for Children
    • Without a Word
    • Prayers of Hope
    • Wonderful Bear
  • Leukodystrophy
    • Leukodystrophies
      • Leukodystrophy Types
      • ALD
      • Alexander Disease
      • Krabbe Disease
      • Metachromatic Leukodystrophy
      • Unspecified Leukodystrophy
    • Leukodystrophy Care Network (LCN)
      • LCN Leadership
      • LCN Coordinating Center
      • LCN Care Centers
      • LCN Clinical Care Coordinators
      • LCN Clinical Practice Guidelines
      • LCN Funding Support
    • Leukodystrophy Resource Library
    • Leukodystrophy Family Support
      • Family Registration
      • Wish Gift
      • Equipment & Supply Exchange
      • Helpful Resources
    • Newborn Screening
      • What is Newborn Screening?
      • Krabbe Disease Screening
      • Take Action
      • Supplemental Newborn Screening
    • 2020 Global Virtual Leukodystrophy Symposium
  • Get Involved
    • Hunter’s Hero
    • Jim Kelly Tailgate
    • Jim Kelly’s NFL Draft Party
    • Jim Kelly – The Glory Years
    • Special Fundraisers
    • Strategic Partners
    • Volunteer
  • Shop for Hope
    • Supplemental Newborn Screening
    • Bears – Collectible, Limited Edition
    • Hunter’s Hero
    • Kelly Family Books
    • “Light Your Heart With Hope”
    • Kelly Tough Gear
    • h.b.

Parent Survey

  1. Home
  2. Newborn Screening
  3. Krabbe Disease Screening
  4. Parent Survey

What is NBS?

Newborn Screening (NBS) is an infant screening public health program.  Learn more at Babies First Test which serves as a Clearinghouse for NBS information. 

What is Krabbe Disease?

There are varying forms of Krabbe disease and it is important that a diagnosis is made as soon as possible to ensure that appropriate treatment is administered. The vast majority of infants with a positive screen for Krabbe either do not have the most severe form of the disease (EIKD), or they are carriers. For infants that are affected by EIKD, there is HOPE – through early diagnosis and treatment (Cord Blood Transplant), children have a chance for a healthy life.

Learn more here.

Krabbe NBS Parent Brochure

Click here for the Krabbe Newborn Screening Brochure.

Para español cliqué aqui.

Krabbe NBS Parent Survey

If you are a parent whose child received a positive newborn screen for Krabbe disease, we would be most grateful if you would complete the survey below. Your answers will greatly help other families. Thank You!

PARTICIPATE IN THIS SURVEY

  • Column 1
    • Donate
    • About Us
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  • Column 2
    • Leukodystrophies
      • Leukodystrophy Care Network
      • About Leukodystrophies
      • Wall of Fame for Children
      • Family Registration
      • Family & Medical Symposium
      • Equipment & Supply Exchange
      • Wish Gift
  • Column 3
    • Newborn Screening
      • What is Newborn Screening?
      • Krabbe Disease Screening
      • Take Action
      • Supplemental Newborn Screening
    • Research
  • Column 4
    • Get Involved
      • Hunter’s Hero
      • Hunter’s Day of Hope
        and Prayer for Children
      • Jim Kelly’s NFL Draft Party
      • Jim Kelly – The Glory Years
      • Special Fundraisers
      • Strategic Partners
      • Volunteer
    • Shop for Hope
  • Home
  • Krabbe & Leukodystrophies
  • Krabbe Disease
  • About Leukodystrophies
  • Research
  • Newborn Screening
  • Leukodystrophy Care Network
  • Leukodystrophy
  • Get Involved
  • About Us
  • Contact Us
Hunter's Hope

PO Box 643
Orchard Park, NY 14127
(716) 667-1200

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"For I know the plans I have for you," declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."

Jeremiah 29:11

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