Recognizing the similarities of thalassaemia with other rare anaemias, particularly those affecting red blood cells, (e.g. PKD, SCD), and noting the absence of disease-specific united internationally coordinated patient organizations to guide and fulfil the educational and advocacy needs of these patient communities, TIF has felt the ethical obligation to include in its educational and advocacy programmes other rare anaemias and share the Federation’s expertise, infrastructure and resources.
To this end, we have created a specific section in our website dedicated exclusively to Pyruvate Kinase Deficiency (PKD), an inherited metabolic disorder of the enzyme pyruvate kinase which affects the survival of red blood cells.
TIF aims to provide assistance and support to the wider patient community and healthcare professionals working in the field of this disorder, and hopes that, through the unification of the patient voice against common challenges, strength in numbers will lead to policy and other changes to improve the lives of PKD-affected patients globally.
Discover Useful Information, Educational Material and Resources on PK Deficiency HERE