Information for Parents

The Kansas Newborn Screening Program has developed information sheets for parents about each of the disorders. The table below lists each disorder, a link to the Kansas Information for Parents sheet, as well as additional specific links for many of the disorders.

Financial assistance for clinic services and treatments may be available to the family upon application to the Special Health Care Needs (SHCN) program.

Another good resource for parents is FELSI (Financial, Ethical, Legal and Social Issues). Click here to go to the FELSI link.

Disorder Type


KS Information for Parents

Other Links


Sickle Cell Disease (SCA)
Beta Thalasemia (S/Thal)
Sickle C Disease (S/C)

KS Information Sheetfor Hemoglobin | |

Other Disorders

Biotinidase Deficiency (BIOT)

KS Information Sheetfor BIOT

Congential Adrenal Hyperplasia (CAH)

KS Information Sheetfor CAH

Congenital Hypothyroidism (HYPOTH)

KS Information Sheetfor HYPOTH

Cystic Fibrosis (CF)

KS Information Sheetfor CF

Galactosemia (GALT)

KS Information Sheetfor GALT

Severe Combined Immunodeficiency (SCID)

Spinal Muscular Atrophy (SMA)

KS Information Sheetfor SMA

Critical Congenital Heart Disease (CCHD)

Amino Acid Disorders

Phenylketonuria (PKU)

KS Information Sheetfor PKU

Maple Syrup Urine Disease (MSUD)

Homocystinuria (HCY)

Tyrosinemia Type I (TYR)

Argininosuccinic acidemia (ASA)

Citrullinemia (CIT)

Fatty Acid Disorders

Medium chain Acyl-CoA Deydrogenase deficiency (MCAD)

KS Information Sheetfor Medium chain Acyl-CoA Deydrogenase deficiency (MCAD)

Very Long chain Acyl-CoA Dehydrogenase deficiency (VLCAD)

Long Chain Hydroxy Acyl-CoA dehydrogenase deficiency (LCHAD)

Trifunctional protein deficiency (TFP)

Carnitine uptake defect (CUD)

Organic Acid Disorders

Isovaleric Acidemia (IVA)

KS Information Sheetfor Isovaleric Acidemia (IVA)

Glutaric Aciduria Type I (GA-I)

3-hydroxy-3methylglutaryl CoA lyase deficiency (HMG)

Multiple carboxylase (MCD)

Methylmalonic Acidemia/Methylmalonyl-CoA mutase (MUT)

Methylmalonic Acidemia/Vitamin B12 Disorders (Cbl A,B)

3-methylcrotonyl-CoA carboxylase deficiency (3MCC)

Propionic Acidemia (PROP)

Beta ketothiolase (BKT)