Education for all
The information below is designed for the whole PK Deficiency community, including healthcare professionals. We believe that information should be accessible to everyone. We think it’s right that all types of information are available to the whole community. The principle ‘nothing about us, without us’ is key.information
Find an Expert PK deficiency hematologist near you
If you’re looking for a hematologist with expertise in PK deficiency, check out this list of experts. Nothing near you? Look for centers that treat people with Sickle Cell Disease or Thalassemia, two similar hemolytic anemias. Doctors who treat patients with these diseases should be familiar with PKD. If they’re not, find an “ally” hematologist who is willing to learn about the current PKD guidelines and treat you or your child according to best practices.
Living with PK Deficiency
Understanding PK Deficiency Brochure (printable pdf)
Information for Caregivers Brochure (printable pdf)
A comprehensive publication on nutrition in two inherited haemolytic anaemias; thalassaemia and PKD, aimed at offering a critical review of existing knowledge, benefiting both haematologists and dietitians in managing patients with these conditions. (printable pdf)
White Paper - Pyruvate Kinase Deficiency - Reflections on the Patient Experience to Support Treatment and Care
Voice of the Patient Report 2019 (printable pdf)
PK Deficiency Information
International PKD Guidlines
PKD Fast Facts for Patients and Supporters
A comprehensive publication on nutrition in two inherited haemolytic anaemias; thalassaemia and PKD, aimed at offering a critical review of existing knowledge, benefiting both haematologists and dietitians in managing patients with these conditions. (printable pdf)
Overview of Iron Overload in PK Deficiency
Prevalence of PKD in Western Populations
PK Deficiency Diagnosis and Management Guidelines
International PK Deficiency Diagnosis and Management Guidelines
Management of pyruvate kinase deficiency in children and adults. Blood, Volume 136, Issue 11, September 10 2020,
How we manage patients with pyruvate kinase deficiency British Journal of Haematology,Volume184, Issue5 March 2019 Pages 721-734
Addressing the diagnostic gaps in pyruvate kinase deficiency: Consensus recommendations on the diagnosis of pyruvate kinase deficiency Am J Hematol. 2019 January ; 94(1): 149–161. doi:10.1002/ajh.25325.
Prevalence and management of iron overload in pyruvate kinase deficiency: report from the Pyruvate Kinase Deficiency Natural History Study - Haematologica. 2019 Feb; 104(2): e51–e53.
PK Deficiency prevelance, aetiology and comorbities
CME opportunity/toolkit - Navigating pyruvate kinase deficiency today: How can the disease burden and unmet treatment needs be addressed?
CEU opportunity - Pyruvate Kinase Deficiency, Stat Pearls Publishing, 2020
Prevalence of Pyruvate Kinase Deficiency: a systemic literature review. April 2020 (printable pdf)
Clinical spectrum of pyruvate kinase deficiency: data from the Pyruvate Kinase Deficiency Natural History Study, Blood, Volume 131, Issue 20, 17 May 2018, Pages 2183-2192
The variable manifestations of disease in pyruvate kinase deficiency and their management Haematologica 2020 Volume 105(9):2229-2239
Comorbidities and complications in adults with pyruvate kinase deficiency, European Journal of Haematology, Volume106, Issue4 April 2021 Pages 484-492
Prevalence and management of iron overload in pyruvate kinase deficiency: report from the Pyruvate Kinase Deficiency Natural History Study - Haematologica. 2019 Feb; 104(2): e51–e53.
Genotype-phenotype correlation and molecular heterogeneity in pyruvate kinase deficiency. Am J Hematol. 2020;95(5):472-482.
Help to manage your PK Deficiency
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