Community Discussion Forum New to New to PKU, advice needed

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  • #8328
    Avatar of L

    I am completely new to PKU and this site and would first of all like to say hello :)

    I don't have PKU, but recently my cousin gave birth to a little baby daughter who happened to have it. Unfortunately, my relatives live in a country where resources are scarce and they are getting on with a very low budget. Government funding is out of the question. They don't have Internet access, which is why I am taking this step on behalf of them.

    The family is quite desperate and they need sponsors to afford the girl's special diet. My question to everyone here is, are there any well-known funds for less fortunate people with PKU? I am by no means asking for money, just some pointers on where to look or what to do in order to help them. I'm not quite sure how much money the special diet costs. Would anyone know what the expenses are? All I know is they can't afford it.

    Other than that, I find this site to be a great spot! Thanks for the info and help thus far.

    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.

    Avatar of L

    Thanks very much! I will look into it! I'm sure there will be a way to make it work.

    Take care

Viewing 3 posts - 1 through 3 (of 3 total)
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