Resources

Association des parents d’enfants phénylcétonuriques (APEP)

The APEP aims to:

  • Share scientific and medical information through professionals;
  • Provide advice and ideas;
  • Allow families to meet and share experiences;
  • Provide financial support if necessary.

CanPKU

Canadian PKU and Allied Disorders Inc. is a non-profit association of volunteers, first organized in the Spring of 2008 based in Toronto, Ontario. They are dedicated to providing accurate news, information and support to families and professionals dealing with phenylketonuria (PKU) and similar, rare, inherited metabolic disorders. Their mission is to improve the lives of people with PKU and allied disorders and the lives of their families.

E.S.PKU

The European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (or E.S.PKU) is the umbrella organisation of about 39 national and regional associations from 30 countries established by parents.

The main event of the E.S.PKU is a yearly European conference. This conference is unique, since both patients (and parents) as well as medical representatives join this meeting.

Cambrooke Foods

Cambrooke Foods has developed more than 100 low-protein foods from breads to desserts for convenient meals and lunch boxes.

Social Media

You are not alone! There are several Facebook groups and pages managed by people affected by Phenylketonuria. These members generously share their experiences, recipes and animate relevant discussions on a wide variety of topics!

I invite you to visit them and enter the conversation!

Facebook (French):

Facebook (English):