Patient Resources

Also available in French, German, Italian, and Spanish

We’re pleased to offer a patient support program for people living with PK deficiency and their caregivers. We will listen to understand the difficulties of living with a rare disease and are here to help provide disease education. Enroll in the program to be connected with a dedicated Patient Support Manager.

Whether you’ve recently been diagnosed, or you’ve been living with PK deficiency for years, learning as much as you can is important. This website is a good place to start.

This brochure provides an overview of PK deficiency as well as tools to help you work closely with your doctor to proactively manage your condition.

If you are a parent or caregiver of someone with PK deficiency, this brochure can help you understand the condition and the impact living with it can have on someone’s life.

Understand more about PK deficiency and read summaries of key research papers published over the past decade. The list of publications and information you gather can also be used to build more proactive discussions with your doctor.

This podcast features patient and caregiver stories, as well as the latest research, developments, and science from leaders in PK deficiency. Join us to share, learn, and connect with one another!

This podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community.

Cheat Codes brings listeners a series of segments and interviews packed with critical education and research information that patients and families need to know. Get the “buzz” around sickle cell from Agios’ own Dr. Z and Dr. C!