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Vincent

Florida · Tyrosinemia
Annual cost: $3600

The average child eats what everyone else eats and thrives based upon a combination of nutrition, exercise and genetics. While we can ...


John

Phenylketonuria (PKU) · Texas

I have avoided purchasing the medical food I needed because we can’t afford the food. I make do with limiting myself to what I can ...

Anthony, 1

Phenylketonuria (PKU) · Texas
Annual cost: $9000

Earlier this year we took custody of our grandson Anthony. He was diagnosed after birth with PKU. He has lived with us since birth, ...


Kathy, Age 55

Florida · Phenylketonuria (PKU)

I’m almost 55 with PKU need I say more… okay was a sample for Kuvan and Lanephex. Amount others like 1st Pku ...

Allen

Michigan · Phenylketonuria (PKU)
Annual cost: $4980

I will begin with saying there are others that are in far greater need of medical nutrition coverage than myself. I have been brought ...


Jane, Age 7

CROHN'S · Illinois
Annual cost: $3960

Jane is a happy and energetic 7-year-old child who lives with her parents and two siblings in Chicago, IL. She was diagnosed with ...


Sarah, Age 50

Phenylketonuria (PKU) · Washington
Annual cost: $14400

Hello, I am a 50 year old Phenylketonuria patient at the UW Medical Center. I am one of the oldest patients in the PNW. My parents ...

Caroline, age 18 months

FPIES · Maryland
Annual cost: $9600

Caroline was born 7 weeks premature. She stopped breathing several times almost dying. Neocate Jr is the only think she eats to ...

Sasha, Age 11

Florida · Tyrosinemia
Annual cost: $6000

My daughter was diagnosed with a genetic inborn error of protein metabolism at 15 months of age. Since that time, our daily life has ...

Will, Age 12

Phenylketonuria (PKU) · Texas
Annual cost: $12000

This coverage would take away added stress on our family and thousands of others. I have the means to afford insurance, but it does ...

Lisa, Age 6

Indiana · Phenylketonuria (PKU)
Annual cost: $3000

We adopted Lisa last year. Prior to that she was in Florida. Due to the low amount covered in Florida Lisa was on a very limited diet. ...

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 ...

Hailey

Iowa · Phenylketonuria (PKU)
Annual cost: $12000

Meet Hailey…our second child and first PKUer. We thought having one child was expensive but having another with PKU is an ...


Tyton, 9 months

Phenylketonuria (PKU) · Utah
Annual cost: $2400

Finding out your little one has a life changing condition at birth can be a whirlwind. Self Discipline is something that is mandatory ...


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 ...