About us

This website is managed by Charlotte, Jennifer, Laure, Maaike and Robert. We are patients with Pyruvate Kinase Deficiency from different countries (USA, United Kingdom, Sweden, The Netherlands and Belgium). Our objective with this website is to give access to comprehensible information about Pyruvate Kinase Deficiency and everything that accompanies living with this disease. We certainly aren’t medical professionals, but we want to share everything we know about our disease.

This website is not sponsored or funded by any organisation or commercial firm. Our managing of this website is based on volunteering because we want to stay fully independent and give objective content. We will of course share information from organisations or commercial firms if we believe the content of it can be interesting for other persons with Pyruvate Kinase Deficiency.


All content on this website is written by patients with Pyruvate Kinase Deficiency and is meant for basic informational purposes only. This website is not intended to serve as medical advice, substitute for a doctor’s appointment or to be used for diagnosing or treating a disease. Users of this website are advised to consult with their physician before making any decisions concerning their health.

The authors of the website have tried to ensure that the information on this website is accurate. However the authors will not accept liability for any loss, damage or inconvenience arising as a consequence of any use of or the inability to use any information on this website.  We are not responsible for claims brought by third parties arising from your use of this website.

We assume no responsibility for the contents of linked websites. The inclusion of any link should not be taken as endorsement of any kind by the us of the linked website, or any association with its operators. Further, we have no control over the availability of the linked pages.


Material on this website, including text and images, is protected by copyright. It may not be copied, reproduced, republished, downloaded, posted, broadcast or transmitted in any way except for your own personal, non-commercial use. Prior written consent of the copyright holder must be obtained for any other use of material. Copyright in all materials and/or works comprising or contained within this website remains with the authors and other copyright owner(s) as specified. No part of this site may be distributed or copied for any commercial purpose. 

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