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Asher, 4

Illinois · Phenylketonuria (PKU)
Annual cost: $1800

Asher is my happy, smart, funny, rambunctious four year old. He loves to play with tractors, his sister, swim, and eat! He loves ...

Liza

Oregon · Phenylketonuria (PKU)
Annual cost: $8400

Because our employer plan is self-funded, and we have no other plan options through the company, I have no coverage for even formula ...

Renee

Illinois · Phenylketonuria (PKU)
Annual cost: $3000

My name is Renee. I am recently married in August 2017. I am currently on pre-con trying for our first child. My levels have been ...

Danae

Homocystinuria · Illinois
Annual cost: $18000

Homocystinuria comes with the risk of heart attacks and strokes when not on diet. In college it was impossible to afford follow the ...

Riley

Illinois · Phenylketonuria (PKU)
Annual cost: $9600

My 3 year old daughter has classical PKU, with coverage for medical nutrition she would be able to eat more food instead of being ...


Sarah, Washington DC Nurse Practitioner

Inborn Errors of Metabolism and Conditions on the RUSP · Provider Stories · Washington DC

Staff time alone is the most major barrier. We are fortunate to have a Metabolic Clinic Manager to keep on top of all the insurance ...

Isabel

New Jersey · Phenylketonuria (PKU)
Annual cost: $3600

I have two daughters. Only the younger one has PKU. We struggle to find foods that Isabel can eat. Medical foods are incredibly ...

Claire, Age 12

Phenylketonuria (PKU) · Utah
Annual cost: $2400

My insurance company recently denied coverage for my daughter’s formula to treat her PKU. They said she can only have formula ...

Owen

Arizona · Phenylketonuria (PKU)
Annual cost: $6000

Having medical coverage for formula and medical foods would be an enormous relief. Even though Owen is only 12, I have worried since ...


Juliana

New York · Phenylketonuria (PKU)
Annual cost: $2400

It would be such a relief for me to know that my daughter would always be able to afford her formula and medical food. My insurer will ...

Jamus, Age 9

FPIES · Nebraska
Annual cost: $1200

My son, Jamus, has FPIES plus and our medical team thinks he has something that doesn’t even have a name put to it yet. He will turn ...

Maeve, Age 8

Phenylketonuria (PKU) · Texas
Annual cost: $3600

As all parents who experience it, we were overwhelmed once we got the call, at 5 days of age, that our daughter Maeve had been ...


Sarah

FPIES · Georgia

Sarah, who lives near Atlanta, GA, was a healthy baby, born full term to a mom who had a normal and healthy pregnancy. She was ...

Breeze, 6

Colorado · Phenylketonuria (PKU)
Annual cost: $2400

My daughter Breeze, was born with a metabolic disease, called PKU. PKU is a rare genetic disease. She is 1 of 15,000 PKUers living ...

The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.