Pyruvate Kinase Deficiency International Alliance
Enhancing the quality of life for patients with PK deficiency and their families by providing awareness, expanding education and promoting advocacy.
Welcome to our updated website. Having recently launched our 2026 - 2030 Strategy, we have developed our homepage around our five themes.
You can navigate to these sections via the links below; for all other content the links in our website header will take you where you need to go.
Our Education page now shows all information on one page and the new Evidence page offers links to the latest data on PK Deficiency.
Take a look around and learn more about PK Deficiency and how we can support our community.
Our Role
Pyruvate Kinase Deficiency International Alliance is a global organisation that supports people living with Pyruvate Kinase Deficiency and their families and friends.
We are a public charity that provides evidence-based education to patients, their caregivers, and the medical community. Founded by patients and caregivers, our nonprofit seeks to advocate on behalf of our community for accessible and affordable treatment options. We support rigorous research that advances the understanding and treatment of pyruvate kinase deficiency for patients of all ages, empowering healthy, long, fulfilling lives.
Our Work
Advocacy
Supporting people to advocate for their own health needs, offering options around healthcare providers, advice on how to approach seeking new treatment options and delivering up-to-date evidence-based information.
Education and Evidence
The Education and Evidence pages are a shared resource for all of our community, including healthcare professionals. We beleive that everyone should have equal access to all of the information available.
These pages include the PK Defiency International Guidelines along with links to other sources of information and evidence.
Research
By seeking information from our community via surveys and questionnaires we can better understand the needs of our comunity, turning this into advocacy action. We also carry out systematic reviews of literature to better understand how PKD affects individuals and turn this into publishable papers.
Community
We are setting up a Community Advisory Board made up of people with PK Deficiency, their families and others who are keen to help our community.
Our CAB will help drive the work that we do by offering ideas and suggestions, along with participating in the running of the
Partnerships
We have a number of close partnerships. Firstly, our healthcare community via our Medical Advisory Board which is supported by the kind generosity of clinicians who give their time for free. The support us in developing our work, offering suggestions on information we should share and ensuring that our research is well developed and properly evidence-based.
We also partner with a number of other organisations supporting people with rare anemia or other rare diseases.
