banner
banner
banner
banner

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. ...

The Smiths

Arizona · Phenylketonuria (PKU)
Annual cost: $12000

Our family is unique, in that I have PKU as well as our four adopted sons. With no guarantee of insurance coverage, I fear that my ...


Zoey, 15 months

New York · Tyrosinemia
Annual cost: $1200

When our daughter was diagnosed with an Inherited Metabolic Disorder at 10 days old I remember the frantic whirlwind of calls, emails, ...

Les

Phenylketonuria (PKU) · Texas
Annual cost: $6000

These medical foods and formulas are not “optional” or “nice to have” for those of us with PKU andsimilar ...

Zoe, Age 4

Phenylketonuria (PKU) · Tennessee
Annual cost: $4200

We adopted our beautiful daughter Zoe three months ago from China. We did extensive research on PKU and prepared ourselves the best we ...

Hannah

Maple syrup urine disease · New York
Annual cost: $1440

We are self-insured. We have had to change health insurances every year for the past several years because the insurance company went ...

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 ...

Lelia, Age 2

Idaho · Phenylketonuria (PKU)
Annual cost: $600

For our family, the most meaningful part of medical nutrition coverage would be hope and confidence for the future. We have coverage ...


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 ...

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 ...

Lincoln, Age 2

California · FPIES
Annual cost: $3600

Lincoln was diagnosed with a severe milk protein allergy at 2 weeks of age after blood was visibly seen in his stool. His pediatrician ...

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 ...

Maximus, 9

Missouri · Phenylketonuria (PKU)
Annual cost: $30000

Earlier this year we experienced what not being able to afford formula & medications or have no insurance coverage is like for so ...

Nia, Age 3

Maple syrup urine disease · Ohio
Annual cost: $3600

Insurance covers my daughters medical formula but doesn’t cover her medical foods. If my daughters medical foods were covered it ...

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