Parent & Guardian Resources

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).

Disorder Type



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

Lysosomal Storage Disorders

MPS I (Hurler Syndrome)

Other Disorders

Biotinidase Deficiency (BIOT)

Congenital Adrenal Hyperplasia (CAH)

Congenital Hypothyroidism (HYPOTH)

Cystic Fibrosis (CF)

Galactosemia (GALT)

Severe Combined Immunodeficiency (SCID)

Spinal Muscular Atrophy (SMA)

Critical Congenital Heart Disease (CCHD)

Amino Acid Disorders

Phenylketonuria (PKU)

Maple Syrup Urine Disease (MSUD)

Homocystinuria (HCY)

Tyrosinemia Type I (TYR)

Argininosuccinic acidemia (ASA)

Citrullinemia (CIT)

Fatty Acid Disorders

Medium chain Acyl-CoA Dehydrogenase 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)

Glutaric Aciduria Type I (GA-I)

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

Multiple carboxylases (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)