Other Resources

What is PKU?

When untreated, people with PKU are at risk for severe neurological challenges, including mood disorders, IQ loss, intellectual disabilities, memory challenges, and concentration problems.

What Treatments Are Available?

Fortunately, the PKU test diagnoses almost all newborn children so that proper treatment can be provided immediately. Treatment for PKU consists of a very strict diet that eliminates virtually all protein. In the last decade, treatment has  evolved to include the medications Kuvan ((sapropterin dihydrochloride) and Palynziq (pegvaliase-pqpz) that enables people with PKU to create at least some of the enzyme that breaks down PHE. However, much more research needs to be done on treatments and the ultimate goal of a cure!

Other Resources:

• National PKU Alliance:  NPKUA
• National PKU Alliance Community:  https://www.facebook.com/NationalPKUAlliance/
• Cook For Love – Low Protein Recipes:  https://cookforlove.org/
• Cook For Love – Low Protein Cooking for the PKU Community:  https://www.facebook.com/groups/cookforlove/
• How Much Phe? PKU Diet Management System:  https://howmuchphe.org/
• PKU Strong Community:  https://www.facebook.com/PKUStrong/
• MAPKUP YouTube Page: https://www.youtube.com/channel/UCFR_Nfk6-kZkc8bBR-cFhmw
• PKU Animations for Kids – The Low-Phe Life: https://www.youtube.com/channel/UCIrRNtD4EeZzKQMyavLM54g
• PKU Lunch Mom https://www.instagram.com/pku_lunch_mom/
• PKU Chef https://www.instagram.com/thepku_chef/

Resources for Insurance Advocacy and Procuring Medical Foods:

• Cambrooke Care’s program located at this website: https://www.cambrooke.com/support/reimbursement/#.Ym9HCR0pDfZ
• NORD also offers some aid to our community. They help with co-pay assistance, premium assistance, medical assistance and medical foods & formulas. Please use the contact information below to find out more details about any of these programs:
  • Contact: 1-855-628-0646
  • Email: pku@rarediseases.org
  • Fax: 1-203-798-2964
  • NORD Patient Assistance Program: learn more about this program
• We also are lucky to have a NPKUA insurance advocate that can help you with resources. Please reach out to this email: carol@exch.npkua.org. The NPKUA also has some resources for patients located on the following page: https://www.npkua.org/Resources/Insurance-Coverage-101