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

Conditions

KS Information for Parents

Other Links

Hemoglobinopathies

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

KS Information Sheetfor Hemoglobin

http://www.babysfirsttest.org/newborn-screening/conditions/s-beta-thalassemia

http://www.babysfirsttest.org/newborn-screening/conditions/s-c-disease

http://www.babysfirsttest.org/newborn-screening/conditions/sickle-cell-anemia

Other Disorders

Biotinidase Deficiency (BIOT)

KS Information Sheetfor BIOT

http://www.babysfirsttest.org/newborn-screening/conditions/biotinidase-deficiency

Congential Adrenal Hyperplasia (CAH)

KS Information Sheetfor CAH

http://www.babysfirsttest.org/newborn-screening/conditions/congenital-adrenal-hyperplasia

Congenital Hypothyroidism (HYPOTH)

KS Information Sheetfor HYPOTH

http://www.babysfirsttest.org/newborn-screening/conditions/primary-congenital-hypothyroidism

Cystic Fibrosis (CF)

KS Information Sheetfor CF

http://www.babysfirsttest.org/newborn-screening/conditions/cystic-fibrosis-cf

Galactosemia (GALT)

KS Information Sheetfor GALT

http://www.babysfirsttest.org/newborn-screening/conditions/classic-galactosemia

Amino Acid Disorders

Phenylketonuria (PKU)

KS Information Sheetfor PKU

http://www.babysfirsttest.org/newborn-screening/conditions/classic-phenylketonuria-pku

Maple Syrup Urine Disease (MSUD)

http://www.babysfirsttest.org/newborn-screening/conditions/maple-syrup-urine-disease-msud

Homocystinuria (HCY)

http://www.babysfirsttest.org/newborn-screening/conditions/homocystinuria

Tyrosinemia Type I (TYR)

http://www.babysfirsttest.org/newborn-screening/conditions/tyrosinemia-type-i

Argininosuccinic acidemia (ASA)

http://www.babysfirsttest.org/newborn-screening/conditions/argininosuccinic-aciduria

Citrullinemia (CIT)

http://www.babysfirsttest.org/newborn-screening/conditions/citrullinemia-type-i

Fatty Acid Disorders

Medium chain Acyl-CoA Deydrogenase deficiency (MCAD)

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

http://www.babysfirsttest.org/newborn-screening/conditions/medium-chain-acyl-coa-dehydrogenase-deficiency

Very Long chain Acyl-CoA Dehydrogenase deficiency (VLCAD)

http://www.babysfirsttest.org/newborn-screening/conditions/very-long-chain-acyl-coa-dehydrogenase-deficiency

Long Chain Hydroxy Acyl-CoA dehydrogenase deficiency (LCHAD)

http://www.babysfirsttest.org/newborn-screening/conditions/long-chain-l-3-hydroxyacyl-coa-dehydrogenase-deficiency

Trifunctional protein deficiency (TFP)

http://www.babysfirsttest.org/newborn-screening/conditions/trifunctional-protein-deficiency

Carnitine uptake defect (CUD)

http://www.babysfirsttest.org/newborn-screening/conditions/carnitine-uptake-defect

Organic Acid Disorders

Isovaleric Acidemia (IVA)

KS Information Sheetfor Isovaleric Acidemia (IVA)

http://www.babysfirsttest.org/newborn-screening/conditions/isovaleric-acidemia

Glutaric Aciduria Type I (GA-I)

http://www.babysfirsttest.org/newborn-screening/conditions/glutaric-acidemia-type-i

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

http://www.babysfirsttest.org/newborn-screening/conditions/3-hydroxy-3-methylglutaric-aciduria

Multiple carboxylase (MCD)

http://www.babysfirsttest.org/newborn-screening/conditions/holocarboxylase-synthetase-deficiency

Methylmalonic Acidemia/Methylmalonyl-CoA mutase (MUT)

http://www.babysfirsttest.org/newborn-screening/conditions/methylmalonic-acidemia-methymalonyl-coa-mutase-deficiency

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

http://www.babysfirsttest.org/newborn-screening/conditions/methylmalonic-acidemia-cobalamin-disorders

3-methylcrotonyl-CoA carboxylase deficiency (3MCC)

http://www.babysfirsttest.org/newborn-screening/conditions/3-methylcrotonyl-coa-carboxylase-deficiency

Propionic Acidemia (PROP)

http://www.babysfirsttest.org/newborn-screening/conditions/propionic-acidemia

Beta ketothiolase (BKT)

http://www.babysfirsttest.org/newborn-screening/conditions/beta-ketothiolase-deficiency