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

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Anonymous

Check out the National Organization for Rare Diseases, NORD (http://www.rarediseases.org  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.

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