FAMILIES

Educational Materials

"The Story of Newborn Screening" by Harvey Levy, MD:

A 10-part webcast from the New England Regional Consortium describing the basics of newborn screening (may be viewed in its entirety or in individual segments).

Newborn Screening Education Brochures

Brochure for Parents - Model developed for state use based on parent focus groups
Brochure for Providers: - Model developed for state use based on provider focus groups
Brochure for Grandparents
Foreign Language Materials and Translation rating system

Disease Specific Brochures

Samples of patient education brochures*.  Click on a state/program abbreviation to see different examples. Other languages listed as available.

3-MCC Deficiency
English: KY

5-Oxoprolinuria
English: IL

Alpha Thalassemia
English: WA
Cambodian: WA
Chinese: WA
Laotian WA
Spanish WA
Vietnamese WA

Arginosuccinic Acidemia
English KY

Beta Ketothiolase (BKT)
English KY

Beta Thalassemia
English WA

Biotinidase Deficiency
English IL KY NJ WA WA

Carnitine Uptake Deficiency (CUD)
English KY

Citrullinemia
English KY

Congenital Hypothyroidism
English KY NJ WA

Congenital Adrenal Hyperplasia
English IL KY NJ WA

Cystic Fibrosis
English IL KY NJ WA WI

Fatty Acid Oxidation Disorders
English NJ

Galactosemia
English IL KY NJ WA WA

Glutaric Acidemia Type I (GAI)
English KY

Hemoglobin Sickle/beta Thalassemia
English KY

Hemoglobin S/C
English KY

Hemoglobin C
English WA WA WA WI
Spanish WA WA

Hemoglobin D
English WA WA

Hemoglobin E
English WA WA
Cambodian WA
Chinese WA
Laotian WA
Vietnamese WA

Hemoglobin Variant
English WA

Homocystinuria
English IL KY WA

Hydroxymethylglutaric Aciduria (HMG)
English KY

Isovaleric Acidemia
English KY

LCHADD
English KY

MCADD
English IL KY WA

Methylmalonic Acidemia (MMA)
English KY

Maple Syrup Urine Disease (MSUD)
English IL KY NJ WA

Multiple Carboxylase Deficiency
English KY

Organic Acid Disorders
English IL

PKU (Phenylketonuria)
English IL KY WA WA

Propionic Acidemia
English KY

SCADD
English KY

Sickle Cell
English IL KY NJ WA WA WI
Spanish WA WA WI

Trifunctional Protein Deficiency (TFP)
English KY

Tyrosinemia
English IL KY

Urea Cycle Disorders
English IL NJ

VLCADD
English KY