Our Strategy 2026 - 2030

Pyruvate Kinase Deficiency International Alliance Strategy 2026 - 2030

The strategy is based upon five pillars

An illustration of a Greek temple with five columns, each labeled with a different word: Advocacy, Research, Education, Community, and Partnerships. The temple has a logo with a red virus symbol at the top. A message at the bottom reads, "People living with PK deficiency and their families have as healthy and fulfilling a life as possible."

Vision

Our vision is to see people living with PK deficiency and their families have as healthy and fulfilling a life as possible.

Mission

Our mission is to connect the Pyruvate Kinase Deficiency community by sharing information and resources on treatment options, increase social support, and increase public awareness of this hereditary anemia. 

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

This strategy sets out the themes that the work of PKDIA will follow.  A delivery plan will be developed, regularly reviewed, and revised.  Fundamentally, if activity does not fit within one of the five themes, it will not take place.

Guiding principles

  • PKDIA will always work to support the delivery of support for people with pyruvate kinase deficiency and, where suitable, with other rare anaemias.

  • PKDIA will seek external funding both for general and specific purposes from individuals, other non-profit organisations and health technology companies.  Due diligence will be undertaken as far as possible to ensure that funds come from legal and ethical sources.

  • PKDIA will consult with its members and Medical Advisory Board to ensure that the actions carried out by Board members will offer benefits for the PKDIA globally.

  • As an international organisation, there will be occasions when activity focuses on particular parts of the global community or specific nations or continents.