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 Children & Youth with Special Health Care Needs (CYSHCN) 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 Sheet	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)