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The NSPKU cannot be held responsible for the content of external web sites.

The NSPKU makes every effort to ensure that the sites listed below are relevant to PKU, suitable for a general audience, and that the links are correctly identified. However, these sites are not under the control of the NSPKU and therefore responsibility for their availability and content lies with their authors.

If you find that any of the links below consistently fail to work, please email us and we will amend or remove the link.

UK Sites and Contacts

Patient Information Publications - a site with links to many of the self-help and patient support groups in the UK.

The newborn screening programme

http://www.midirs.org/ MIDIRS (Midwives Information and Resource Service) educational charity.

European Sites and Contacts

ESPKU The European Society for PKU

www.phenylcetonurie.org French support group

Centre for Rare Disorders in Norway - a Norwegian site but with some English pages.

DIG-PKU - The Deutsche Interessengemeinschaft Phenylketonurie - the PKU society in Germany. Its pages are all in German text.

Non-European Sites and Contacts

National PKU News - This is a prime source of PKU information in the United States. Much of the information is aimed at dealing with health provision in the US but there are some excellent articles and links to other information sources and information on how to subscribe to National PKU News - the leading PKU newsletter in the US.

PKU Support Group of Florida - This lists lots of contact points in Florida. This could be useful for people with PKU and their families who may be visiting Florida.

PKU Listserv - A super information sharing facility set up by BJ & Marsha Magol who also look after the Florida Support Group web site. Listserv is a shared email facility whereby people can share their concerns, information and ideas about PKU with other people around the world. There are over 600 subscribers to the service (which is free) and the number is growing daily.

PKU Parents in California

Children's PKU Network - a California based organisation who provide support and literature to many PKU families across the US.

Montreal Children's Hospital - MCH is one of the foremost PKU treatment centres in Canada. This link takes you to the web version of MCH's PKU Resource Booklet for Families. This gives a good, readable guide to PKU, its diagnosis and treatment. As its name suggests, it is aimed at the families of children with PKU. (Caution for UK families - Canada uses a different exchange system to that in the UK. Consult your PKU clinic before making any changes to the PKU treatment).

Phenylalanine Hydroxylase database - Another part of the Canadian site giving in-depth details about Phenylalanine Hydroxylase. This site contains a lot of information that would be useful to students and researchers.

NOAH - A USA-based site that gives a good general description of PKU and its treatment. This is a site that would be useful to families new to PKU as well as students.

NORD - Another USA-based site that gives information about many rare disorders.

Genetic interest group

Genetic Interest Group

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Copyright © 2004-2009 National Society for Phenylketonuria Charity number 273670.
Last modified: 16 June, 2010.