People with Inborn Errors of Metabolism and Conditions on the RUSP who rely on medical foods

Kurt

Maryland · Phenylketonuria (PKU)
Annual cost: $8400

Having coverage for medical nutrition would mean I would have access to life-saving foods and formulas without ever having a lapse in ...

Camden, Age 10

Indiana · Isovaleric acidemia
Annual cost: $1200

Our adopted son was diagnosed with isovaleric acidemia at birth. This is an incurable disorder that can be managed with a low-protein ...

Grayson, Age 2

Colorado · Homocystinuria
Annual cost: $1440

Grayson needs to take an injection of a specialty compounded form of B12 called Hydroxocobalamin. Our insurance through my husbands ...

Leah, Age 12

Alabama · Homocystinuria
Annual cost: $3600

We have an excellent private BCBS insurance policy, that we pay monthly for. As great as it is, it will not cover our daughters ...

Kelly

Homocystinuria · Michigan
Annual cost: $3600

My name is Kelly and I was born on October of 1989. I appeared to be a perfectly healthy baby, the youngest of three, to loving ...

Elyse

Colorado · Phenylketonuria (PKU)
Annual cost: $3600

Medical nutrition coverage would mean FREEDOM. Freedom from worry and the freedom to be able to make normal life choices such as what ...

Heather

Missouri · Phenylketonuria (PKU)
Annual cost: $14400

I have phenylketonuria and am required to eat low protein foods and drink a formula supplement daily FOR LIFE. Without these items I ...

Melissa, Age 26

Phenylketonuria (PKU) · Texas
Annual cost: $8840.04

I am a 26 year old with PKU. I am pregnant with my second child. Maternal PKU is so important because being off diet can cause harm to ...

Caroline, RD

Immunoglobulin E & non-Im­mu­no­glob­u­lin E-mediated allergies to food proteins · Inborn Errors of Metabolism and Conditions on the RUSP · Medical or Surgical Condition of Malabsorption · Minnesota · Provider Stories

I am a Registered Dietitian for GI disorders. I spend probably 10-20% of every week working on ordering medical foods for patients ...

Annabelle, Age 4

Phenylketonuria (PKU) · South Carolina
Annual cost: $600

Having medical food coverage would expand our daughter’s ability to try new and different foods. Medical foods such as rice, ...

Liam, Age 1

Massachusetts · Phenylketonuria (PKU)
Annual cost: $3600

Right now my husband and I are financially stable and we can afford the almost $100 per month we spend on medical formula and the ...

Briana

Oklahoma · Phenylketonuria (PKU)
Annual cost: $9000

Briana was born in 1989 and there were not many supports for her then, both in medical assistance or low protein supplement and food ...