JUST LANDED | The Pyruvate Kinase Deficiency AAC White Paper Now On TIF’s Website
This White Paper on Pyruvate Kinase (PK) Deficiency, a landmark report developed by the PK Deficiency Advocacy Advisory Council (AAC), takes a deep dive into the experiences of patients living with this rare and under-recognized haemolytic anemia, while exploring several themes and key aspects for the improvement of their provided care.
The White Paper, based on the findings of a large international survey that looked into communication between PKD patients and caregivers and haematologists, also highlights the unmet needs and perceived challenges of the global PKD patient community and provides actionable guidance and recommendations for all involved stakeholders.
Through the White Paper, the AAC multi-disciplinary group of patients, caregivers, patient advocates and physicians aims to support the vision that people around the world affected by PK deficiency receive timely diagnosis and can easily access the education, support and care they individually need.
TIF, represented in the AAC by its Operations Manager, Mrs Lily Cannon, is proud to be part of this substantial advocacy work.