PK Deficiency Resources
and Support
With the support of these resources, begin advocating for yourself
ABOUT PK DEFICIENCY
Latest Resources
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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.
Other Helpful Resources
About PK Deficiency
Latest Resources
Other Helpful Resources
myPKD App
A mobile web app where you can track your daily symptoms, save reports, and share updates with your healthcare team and others.
MAKE AN ACCOUNT
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 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 SITEPK 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.
DOWNLOAD THE ARTICLEPATIENT AND CAREGIVER SUPPORT
The communities below can offer more support from others with rare diseases.
myAgios Patient Support Services
Learn more about the program and how Patient Support Managers can help during your journey with PK deficiency.
Visit myAgiosGlobal Genes
This Agios-sponsored 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 SiteThe Peak Registry
The Peak Registry is a database that collects information from people with PK deficiency of all ages to help doctors and researchers understand more about the full spectrum of the disease, including impact on quality of life.
Visit sitePyruvate 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 SiteThalassaemia 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
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.
Youtube Channel
Watch videos that provide additional information and resources,
and also generate awareness, to support people living with PK deficiency and their families.
Know PK Deficiency Facebook Page
Connect with both those who have PK deficiency
and their caregivers.
Follow Know PK Deficiency
Follow us on Instagram to stay connected with the
community and get Know PK Deficiency updates.
ADDITIONAL RESOURCES
While these materials were not created for people with PK deficiency, they contain useful information to anyone living with a chronic condition.
Kids 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 SiteTips 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