Emily, 11

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

My insurance as a NYC public school teacher covers Emily’s medical formula only. But it is never easy. Every year there is a ...

Emeline

Maryland · Phenylketonuria (PKU)
Annual cost: $5400

Having coverage for medical nutrition would mean so much to me and my family. As of now, my family pays about $450 out-of-pocket for ...

Tyler

Massachusetts · Phenylketonuria (PKU)
Annual cost: $1020

Insurance covers formula (so many cans a month) and also covers up to $5000 of food during the fiscal year July-April. If during the ...

Ethan

New York · Tyrosinemia
Annual cost: $4800

Ethan has tyrosinemia and cannot eat a regular diet. He is restricted on the amount of protein he is able to consume on a daily basis, ...


Stephanie, Florida Dietitian

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

Coverage of medical foods is a large part of my practice in both my time-effort and my care recommendations for patients. For every ...

Drake, Age 3

Kansas · Phenylketonuria (PKU)
Annual cost: $6000

Our insurance covered the medical beverage for one year and then stopped. This was so terrible because we had no notice and the ...

Mayes, Age 4

EOSINOPHILIC DISORDERS · Texas
Annual cost: $7200

Mayes was diagnosed with EoE and EC at the age of 15 months old, after a long and painful process of seeking a diagnosis. He was ...

Andrea

Phenylketonuria (PKU) · Texas
Annual cost: $10800

I am a new mom and PKU adult, I rely on my medical food to provide myself and my son the necessary nutrition for everyday life. All ...

Saylah, Age 2

Kansas · Phenylketonuria (PKU)
Annual cost: $2400

My daughter has a milder form of PKU and therefore does not need as much formula to live a healthy life. However, as she gets older ...


Danielle, Age 3

Florida · SBS
Annual cost: $12000

Our beautiful happy and energetic three year old daughter Danielle was born at 35 weeks New Year’s Day 2016. She was diagnosed at ...

Audrey, Age 12

Maryland · Tyrosinemia
Annual cost: $420

Complete cost coverage would be wonderful, but more importantly for us, awareness of the medical need for this coverage and how it ...


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 ...


Katherine, RD

California · Immunoglobulin E & non-Im­mu­no­glob­u­lin E-mediated allergies to food proteins · Medical or Surgical Condition of Malabsorption · Provider Stories

As a Registered Dietitian who works in a pediatric outpatient gastroenterology and nutrition office, I routinely work with children ...