Community Discussion Forum New to New to PKU, advice needed Reply To: New to PKU, advice needed

Avatar of

Check out the National Organization for Rare Diseases, NORD (  I think).  It is a U.S. based organization, but they may be able to point you in the right direction. 

In addition you could google PKU or phenylketonuria and the country they live in to see if there are support organizations.  I know Canada, Europe and Asia have organizations.

The diet is extremely expensive.  The formula alone could cost $800 a month and special foods are 3 to 10 times more expensive than regular foods.

Best wishes.

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional