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.)
Thrive with PK Deficiency Organization (U.S.)
Voice of the Patient Report
Pyruvate Kinase Deficiency Fast Facts Brochure
Thalassaemia International Federation’s PK Deficiency Resources
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.
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.
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.
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.
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.
Just Listen: Voices of PK Deficiency Podcast
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!
Resources for Thalassemia
Cooley’s Anemia Foundation
Thalassaemia International Federation
Agios Resources for Thalassemia
Thal Pals: The Alpha Beta Revolution Podcast
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.
Resources for Sickle Cell Disease
Sickle Cell Disease Association of America
Sickle Cell Community Consortium
Sickle Cell Disease Coalition
Sickle Cell 101
Sickle Cell Society UK
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!
Resources for Rare Metabolic & Blood Disorders
Stichting Zeldzame Bloedziekten / Foundation for Rare Blood Diseases (The Netherlands)
ENERCA — European Network for Rare and Congenital Anaemias
Metabolic Support UK
Resources for Rare Diseases
NORD — National Organization for Rare Disorders (U.S.)
EveryLife Foundation for Rare Diseases (U.S.)
EURORDIS — European Organisation for Rare Disease
CORD — Canadian Organization for Rare Disorders