Our Mission

Board members from the Pyruvate Kinase Deficiency Foundation and Thrive with Pyruvate Kinase Deficiency Organization are proud to announce the merger of their nonprofits after successfully working together on several projects in 2024 fostering global accessibility and inclusivity.

PKDIA is an international nonprofit organization devoted to enhancing the quality of life for patients and their families by raising awareness, expanding education, and promoting advocacy. PK deficiency is caused by a mutation in the PKLR-gene, resulting in moderate to severe life-long anemia and more importantly, iron-overload throughout the body that contributes to several comorbidities. Correct diagnosis and proper treatment are critical to the life expectancy and qualify of life in people living with PK deficiency.

Our Objectives

  • Developing programs that meet the medical, financial, psychosocial and education concerns/needs of those affected by PK deficiency  

  • Offering educational and support materials through its website, provider database, newsletter, and brochures

  • Providing a national database of specialists knowledgeable in PK deficiency

  • Providing resource listing of physicians participating in clinical trials

  • Sponsoring education to assist medical professionals in establishing appropriate standardized diagnostic and treatment guidelines

  • Sponsoring national and regional meetings

  • Supporting research into the cause and management of PK deficiency