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

www.sicklecelldisease.org/

Other Disorders

Biotinidase Deficiency (BIOT)

KS Information Sheetfor BIOT

http://biotinidasedeficiency.20m.com/

Congential Adrenal Hyperplasia (CAH)

KS Information Sheetfor CAH

www.congenitaladrenalhyperplasia.org/

Congenital Hypothyroidism (HYPOTH)

KS Information Sheetfor HYPOTH

 

Cystic Fibrosis (CF)

KS Information Sheetfor CF

www.cff.org/AboutCF/Testing/NewbornScreening/

Galactosemia (GALT)

KS Information Sheetfor GALT

www.galactosemia.org/

Amino Acid Disorders

Phenylketonuria (PKU)

KS Information Sheetfor PKU

www.pkunetwork.org/

Maple Syrup Urine Disease (MSUD)

www.msud-support.org/

Homocystinuria (HCY)

www.savebabies.org/for Homocystinuria

Tyrosinemia Type I (TYR)

www.savebabies.org/for Tyrosinemia

Argininosuccinic acidemia (ASA)

www.nucdf.org/

Citrullinemia (CIT)

 

Fatty Acid Disorders

Medium chain Acyl-CoA Deydrogenase deficiency (MCAD)

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

www.fodsupport.org/

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)

www.oaanews.org/

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)