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Andrew, Age 18

Texas · Tyrosinemia
Annual cost: $9600

My mother has worked as many as 5 jobs concurrently to maintain employer-provided insurance and has CONSTANTLY fought to keep me on a ...


Ian, Age 12

3-Hydroxy-3-methyglutaric aciduria · Arizona
Annual cost: $3600

Having better coverage will will certainly lower our costs. To have to pay escalating insurance premiums plus the cost of formula and ...

Amber

Indiana · Phenylketonuria (PKU)
Annual cost: $4980

I was born in 1990 with PKU. My parents were told to expect severe disabilities. We need these medical foods for our everyday lives. ...

Seton, Age 3

FPIES · Wisconsin
Annual cost: $3600

Our son was diagnosed with FPIES at around 7 months of age. He is intolerant or allergric to upwards of 40 foods. Even at the current ...

Levi, Age 2

Phenylketonuria (PKU) · Utah
Annual cost: $9960

His medical formula/milk costs about $130 a can. He goes through about 5 cans a month. Thankfully that’s currently covered under ...


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 ...

Millie

Alabama · Phenylketonuria (PKU)
Annual cost: $9600

Because of my early and consistent nutritional treatment, I developed normally and graduated high school and then college. I currently ...

Lena, Age 2

Phenylketonuria (PKU) · Utah
Annual cost: $1200

We spend every day planning and preparing. Not only what our daughter will eat today and in the week ahead but also for her future. ...

Angelica

Kansas · Phenylketonuria (PKU)
Annual cost: $12000

Stepping out of the Blue – (Bear with me for a moment, this will all make sense in the end) Where it all began: I located a new ...

Owen

Phenylketonuria (PKU) · Utah
Annual cost: $36000

Medical nutrition coverage would make an enormous difference to our entire family. We spent years in school to provide a good living ...


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 ...

Emalynn

Phenylketonuria (PKU) · Virginia
Annual cost: $5040

When Emalynn was born and diagnosed with PKU, we had no idea what to expect or think. Luckily we were blessed with a bright happy 3 ...

Hailey, Age 1

Iowa · Phenylketonuria (PKU)
Annual cost: $7200

Coverage would give our family peace of mind. My youngest daughter, Hailey, has PKU. Everyday, she is required to drink a very ...

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