Patient Resources

Learn more about the serious condition affecting you or a loved one, connect with others who are on a similar journey, and share your story.

Information is power

We know that reliable information can be hard to come by. We can help.

Check out our list of vetted Agios and third-party resources for patients and caregivers.

Resources for Pyruvate Kinase Deficiency

Pyruvate Kinase Deficiency Foundation (U.S.)

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Thrive with PK Deficiency Organization (U.S.)

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Voice of the Patient Report

Also available in French, German, Italian, and Spanish

Read Report

Pyruvate Kinase Deficiency Fast Facts Brochure

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Thalassaemia International Federation’s PK Deficiency Resources

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Agios Resources for Pyruvate Kinase Deficiency

MyAgios® Patient Support Program (U.S. residents only)

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.

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Know PK Deficiency Website

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.

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Understanding PK Deficiency Brochure

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.

View Brochure (U.S. residents only) View Brochure (EU + UK residents only)

Information for Caregivers Brochure

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.

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PK Deficiency through the Decade

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.

View Article (U.S. residents only) View Article (EU + UK residents only)

Just Listen: Voices of PK Deficiency Podcast

Introducing an all-new podcast featuring 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!

Tune In

Resources for Thalassemia

Cooley’s Anemia Foundation

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Thalassaemia International Federation

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Resources for Sickle Cell Disease

Sickle Cell Disease Association of America

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Sickle Cell Community Consortium

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Sickle Cell Disease Coalition

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Sick Cells

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Sickle Cell 101

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Sickle Cell Society UK

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Agios Resources for Sickle Cell Disease

Cheat Codes: A Sickle Cell Podcast

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!

Tune In

Resources for Rare Metabolic & Blood Disorders

Stichting Zeldzame Bloedziekten / Foundation for Rare Blood Diseases (The Netherlands)

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ENERCA — European Network for Rare and Congenital Anaemias

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Metabolic Support UK

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Resources for Rare Diseases

NORD — National Organization for Rare Disorders (U.S.)

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Global Genes

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EveryLife Foundation for Rare Diseases (U.S.)

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EURORDIS — European Organisation for Rare Disease

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CORD — Canadian Organization for Rare Disorders

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