PK Deficiency Resources and Support | Know PK Deficiency
See data on the long-term impact of PK deficiency

PK Deficiency Resources
and Support

With the support of these resources, begin advocating for yourself

ABOUT PK DEFICIENCY

Latest Resources

  • Probability of Survival + PK Deficiency Disease Complications Data

    Probability of Survival + PK Deficiency Disease Complications Data

    Explore real-world probability of survival and complications data for people living with PK deficiency. For any questions about the data, speak to a myAgios Patient Support Manager by calling 1-800-951-3889.

  • Peak Registry Plain Language Analysis

    Peak Registry Plain Language Analysis

    Learn more about the age of onset of complications for people living with PK deficiency, as studied by the Peak Registry.

  • Physical and Psychosocial Impacts of PK Deficiency Data

    Physical and Psychosocial Impacts of PK Deficiency Data

    Based on the lived experiences of patients and caregivers, further understand the potential physical and psychosocial impacts of PK deficiency using results from a study conducted by the PK Deficiency Advocacy Advisory Council.

  • Other Helpful Resources

  • myPKD App

    myPKD App

    A mobile web app where you can track your daily symptoms, save reports, and share updates with your healthcare team and others.

  • Understanding PK Deficiency

    Agios 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

    Agios 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 Doctor Discussion Guide

    Agios PK Deficiency Doctor Discussion Guide

    Keeping track of goals, obstacles, and questions can help make sure you and your healthcare team come up with the right management plan for your PK deficiency. Download this discussion guide to help you get organized, make connections, and advocate for yourself as you prepare to meet with your doctor.

  • Quick Reference Guide

    Agios Living with PK Deficiency: Quick Reference Guide

    This guide can be used as a reference for school staff and other adults in your loved one's life to help them understand more about PK deficiency.

  • Monitoring Guide

    Monitoring Guide

    This guide can help keep track of the recommended tests and follow-up assessments needed for people with PK deficiency so you and your doctor can identify health trends early on.

  • PK Deficiency Fast Facts Brochure

    Fast Facts Brochure

    Download the Fast Facts brochure for additional in-depth information about PK deficiency.

    Download the report in your preferred language:
    English | French | German | Italian | Spanish

  • Find a PK Deficiency Specialist

    Agios Find a PK Deficiency Specialist

    Download a list of US-based hematologists with experience treating PK deficiency.

  • PK Deficiency Advocacy Advisory Council (AAC) Survey

    PK Deficiency Advocacy Advisory Council (AAC) Survey

    This white paper shares the results of an international survey exploring communication between PK deficiency patients and caregivers and their hematologists.

  • PK Deficiency Through the Decade

    PK Deficiency Through the Decade

    Read summaries of key research papers published over the past decade to understand more about PK deficiency and have more proactive discussions with your doctor.

  • MyPKD App Flashcard

    MyPKD App Flashcard

    Get more information on how the MyPKD App can help manage your daily life with PK deficiency.

About PK Deficiency

Latest Resources

Other Helpful Resources

PATIENT AND CAREGIVER SUPPORT

The communities below can offer more support from others with rare diseases.

ADDITIONAL RESOURCES

While these materials were not created for people with PK deficiency, they contain useful information to anyone living with a chronic condition.

Anemia ID® is only available to residents of the United States.

All testing provided to patients through Anemia ID is paid for by Agios Pharmaceuticals. While Agios provides financial support for this program, all tests and services are performed by Revvity Omics or InformedDNA. Agios receives contact information for healthcare professionals who submit tests under this program and limited de-identified aggregate data.

Anemia ID is sponsored by Agios in partnership with Revvity Omics. Other laboratories may also offer genetic testing.

All genetic counseling services provided to patients through Anemia ID are paid for by Agios Pharmaceuticals. While Agios provides financial support for this program, all genetic counseling services are performed by InformedDNA. Agios receives contact information for healthcare professionals who request genetic counseling for their patients under this program and limited de-identified data.

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This form is for US residents only. By completing and submitting this form, you agree to allow Agios and its agents to collect the information provided and to contact you regarding its PK deficiency program and related disease information. Agios will not sell or otherwise share the information you provide other than with other companies or organizations acting as our agent to administer this website or to assist in providing the information you have requested.