If you or a family member have been diagnosed with Pyruvate Kinase Deficiency, you probably have many questions running through your head. What kind of disease is it? Will I or my family member be able to live a normal life? What precautions should I take?

The mission of this website is to answer your questions. It is created and managed by Charlotte, Jennifer, Laure, Maaike and Robert. We all have Pyruvate Kinase Deficiency and feel the need to have access to comprehensible information about this rare disorder. Although the website is still under construction, we hope you will find some valuable information.

To have an idea of what it means to have a child with Pyruvate Kinase Deficiency, two parents made a video about the first weeks of the life of their beautiful daughter, Minnie. We are thankful for the opportunity to share this with you.

These are some suggestions to explore our website:

  • Learn more about pyruvate kinase deficiency
  • Read the personal testimonials to learn how other people are living with this disease.
  • Perhaps you will be interested in joining one of the support groups?
  • Keep up to date on the latest and most important news about pyruvate kinase deficiency.
  • Who are the persons behind this website? Read more about us.
  • Do you have a suggestion, a question or do you want to share your story? Feel free to contact us.


3 thoughts on “Welcome

  1. My grandson has just been diagnosed…trying to find out as much as I can from other people who have family members diagnosed


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