In the context of its educational and advocacy efforts within the field of other rare anaemias, beyond thalassaemia and sickle cell disease (SCD), and aiming, in particular, at the support of the broader community of individuals affected by Pyruvate Kinase Deficiency (PKD), TIF went on to issue a PKD Charter of Priorities (CoP); a key advocacy tool for the PKD patient community.
This newly launched document aspires to bring together available information about PKD in an effort to identify gaps, and to make useful imperative suggestions so as to understand what changes need to be applied in order to improve the health and lives of patients living with PKD.
It can also provide the basis for advocacy actions of the wider international PKD community, i.e. caregivers, advocates and clinical experts enabling them to act, together with patients, as a united voice, and is customizable for specific national, regional or global needs.
