Food is the primary medical treatment for people with inborn errors of metabolism requiring a low-protein diet. They can't eat 95% of what's on grocery-store shelves. Doesn't it make sense to make sure they have the information they need to incorporate your products into their diet? It's easy, inexpensive (or free) and gains you a loyal, vocal, and dedicated market.
Phenylketonuria or PKU is a rare genetic metabolic disorder that affects one in 15,000 births. That means only approximately 250 babies will be born with PKU each year. Those with PKU can't effectively break down the amino acid phenylalanine (phe) which is present in all foods containing protein. Excess phe builds up in the body and acts as a neurotoxin, attacking the patient's body and brain.
To stay healthy, most PKU patients follow a strictly protein-limited diet, which generally allows 4-8 grams of protein (roughly 200-400mg of phe) per day, and is supplemented by a medical formula that completes their nutrition. Compare this with a typical diet, in which a people eat 40-60 grams of protein per day. People with PKU cannot eat meat, dairy, fish, nuts, soy, or most bread products.
Managing the diet, and staying full, is difficult. Medical foods are available, but very expensive. Most patients manage with a combination of store-bought, homemade, and medical foods. They are always eager to find new foods they can safely eat. This is where the Partnership for PKU comes in.
With unrounded protein and the ingredient list, our dietetic team can estimate phenylalanine content and add appropriate foods to our database at HowMuchPhe.org.
Why can't we just use the protein value on the label? Here's why:
The PKU community is the very definition of a targeted market: Our needs are specific, we're in constant communication with each other online, and we're very loyal to those products that work for our diet. Joining the Partnership for PKU puts you on our side — and wins our loyalty.
When you become a member of the Partnership For PKU, National PKU News promotes your brands and products through:
We'll feature your logo and link to your web site, work with you on press releases and other media opportunities, and assist you in leveraging the power of the PKU community to support your brand. You can also display the Partnership for PKU stamp of approval on your web site & marketing materials.
There are an estimated 15,000 people living in the U.S. with PKU, and their influcence is wide: Many products consumed by those with PKU are also good for other diets (i.e., gluten-free) and metabolic disorders. When this community finds something great, they share with anyone and everyone who might benefit, expanding your product's market visibility.
Fill out the form below. We'll gather a list of products and/or get in touch for your suggestions, and we can work from there.