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 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 that we are allowed to share this with you.
These are some suggestions to discover our website:
- Learn more about pyruvate kinase deficiency
- Read the personal testimonials to know how other persons are living with this disease.
- Maybe you’ll be interested in joining one of the support groups?
- Get to know the latest and 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.

Please add me to the group
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Can I please be added to this group? My 7 year old daughter hasnPK Deficiency
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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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