PK Deficiency Resources
and Support
With the support of these resources, begin advocating for yourself
ABOUT PK DEFICIENCY
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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.
Download for US residents only
Download for EU and UK residents only -
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.
DOWNLOAD THE BROCHURE -
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.
Download the discussion guide
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Agios Living with PK Deficiency: A 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.
DOWNLOAD THE 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.
DOWNLOAD THE GUIDE -
Fast Facts Brochure
Download the Fast Facts brochure for additional in-depth information about PK deficiency.
DOWNLOAD THE BROCHURE -
Agios Find a PK Deficiency Specialist
Download a list of US-based hematologists with experience treating PK deficiency.
DOWNLOAD THE LIST
-
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.
-
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.
-
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.
-
Agios Living with PK Deficiency: A 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
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.
-
Agios Find a PK Deficiency Specialist
Download a list of US-based hematologists with experience treating PK deficiency.
ABOUT 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.
Download for US residents onlyDownload for EU and UK residents only
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.
DOWNLOAD THE BROCHUREAgios 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.
Download the discussion guideAgios Living with PK Deficiency: A 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.
DOWNLOAD THE GUIDEMonitoring 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.
DOWNLOAD THE GUIDEAgios Find a PK Deficiency Specialist
Download a list of US-based hematologists with experience treating PK deficiency.
DOWNLOAD THE LISTPK 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.
VISIT SITEONLINE SUPPORT
The communities below can offer more support from others with rare diseases.
Pyruvate Kinase Deficiency Foundation
A national nonprofit organization whose mission is to enhance quality of life for patients and their families by providing awareness, expanding education and promoting advocacy.
Visit siteThrive with Pyruvate Kinase Deficiency Organization
This organization's mission is to connect the pyruvate kinase deficiency community through treatment support, increased social awareness, and advocacy.
Visit SiteNational Organization for Rare Disorders
The National Organization for Rare Disorders is dedicated to helping people with rare diseases and assisting the organizations that serve them.
Visit SiteEuropean Organization for Rare Disease
EURORDIS is a nongovernmental patient-driven alliance of patient organizations representing 716 rare disease patient organizations in 63 countries covering over 4000 diseases.
Visit SiteCanadian Organization for Rare Disorders
CORD is Canada’s national network for organizations representing all those with rare disorders, providing a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.
Visit SiteStichting Zeldzame Bloedziekten
Platform Rare Blood Diseases Foundation offers information about PK deficiency, as well as references to websites and social media for most blood diseases.
Visit SiteEuropean Network for Rare and Congenital Anaemias
Established to offer an improved public health services to professional medical practitioners and patients in every aspect of rare anemias.
Visit SiteThalassemia International Federation
This advocacy group offers information about hemoglobin disorders, including PK deficiency.
Visit siteMetabolic Support UK
Metabolic Support UK provides practical advice and patient-friendly information to patients with PK deficiency and their families from diagnosis and beyond. Metabolic Support UK also convenes support groups for people affected by PK deficiency across the United Kingdom.
Visit SiteIN THE COMMUNITY
PK deficiency Facebook page
Connect with both those who have PK deficiency and their caregivers.
Like Us On Facebook
YouTube Channel
Watch videos that provide information, resources, and awareness to support the PK deficiency community, including all previous recordings of the Know PK Deficiency webinar series.
Visit Our YouTube Channel
Patient Webinar Series
Join us for the Know PK Deficiency webinar series to hear from experts about the disease and virtually connect with the PK deficiency community.
Register For An Upcoming Webinar
Just Listen: Voices of PK Deficiency Podcast
Each episode strives to provide
listeners with critical education, the latest
scientific updates, and voices from the PK deficiency community.
Listen To The Podcast
ADDITIONAL RESOURCES
While these materials were not created for people with PK deficiency, they contain useful information to anyone living with a chronic condition.
Global Genes
This organization, founded by friends, family, and supporters of people affected by rare disease, offers information and educational resources, including those for parents and caregivers.
Visit SiteKids and Caregivers
Advice and resources specifically for caregivers of children with a chronic illness.
Visit SiteGenetics Education Materials for School Success (GEMSS)
GEMSS was founded to promote awareness of and education about genetic conditions. Their resources section contains a breakdown of the accommodations and modifications available to children attending public school.
Visit SiteSchool Guide for Students With Primary Immunodeficiency Diseases
This document from the Immune Deficiency Foundation can help facilitate communication among parents, students, and school personnel.
Download ToolTips for Supporting Students With Sickle Cell Disease
While it was created for children and teens living with sickle cell disease, this booklet from the Centers for Disease Control is helpful to teachers, school staff, parents, and caregivers looking for ways to support students living with a chronic condition.
Download ToolAplastic Anemia: An overview for school professionals
Intended to outline accommodations necessary for children and teens living with aplastic anemia, elements of the outlined support plan from Children's Healthcare of Atlanta are helpful for students with PK deficiency.
Download ToolFanconi Anemia Research Fund
Resources created for students with another form of hereditary anemia outline tips for success in school, including the comparison of an Individualized Education Plan (IEP) and a Section 504 Plan.
Visit SiteHow 504 Plans Can Help Children with Chronic Illnesses
This article provides information about children with chronic illnesses, extended illness, and the accommodations specified in a 504 plan.
Read the Article