2/28/18 Rare Disease Day

Each year, the last day of February is recognized as Rare Disease Day. At Children’s Hospital of Michigan Foundation, we are proud to support research and programs that enhance the health and wellness of children. Today, in honor of Rare Disease Day, we’re highlighting one of the programs we support that aims to make an impact on a rare disease.

The Foundation supports an annual Metabolic Clinic 2017 PKU (phenylketonuria) Picnic.

Phenylketonuria (PKU) is a rare condition in which your body cannot break down an amino acid called phenylalanine. Amino acids help build protein in your body. Without treatment, phenylalanine builds up in the blood and causes health problems. The approximate incident rate of PKU in the US is 0.01%. This means about 74 infants every day are diagnosed with PKU.

The purpose of the Metabolic Clinic PKU picnic allows patients and families dealing with PKU the opportunity to come together and grow educational opportunities and support groups.

Through our efforts, we encourage patients and their families to continue treatment for low protein and amino acid disorders and assist them with their dietary needs. We hope to encourage patients to return to diet and seek medical treatment and diet management.