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
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
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
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
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
Download the Fast Facts brochure for additional in-depth information about PK deficiency.
DOWNLOAD THE BROCHURE
Download a list of US-based hematologists with experience treating PK deficiency.
DOWNLOAD THE LIST
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.
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.
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.
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.
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 a list of US-based hematologists with experience treating PK deficiency.
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 onlyIf 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 BROCHUREKeeping 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 guideThis 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 GUIDEThis 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 GUIDEDownload a list of US-based hematologists with experience treating PK deficiency.
DOWNLOAD THE LISTThis white paper shares the results of an international survey exploring communication between PK deficiency patients and caregivers and their hematologists.
VISIT SITEThe communities below can offer more support from others with rare diseases.
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 siteThis organization's mission is to connect the pyruvate kinase deficiency community through treatment support, increased social awareness, and advocacy.
Visit SiteThe National Organization for Rare Disorders is dedicated to helping people with rare diseases and assisting the organizations that serve them.
Visit SiteEURORDIS is a nongovernmental patient-driven alliance of patient organizations representing 716 rare disease patient organizations in 63 countries covering over 4000 diseases.
Visit SiteCORD 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 SitePlatform Rare Blood Diseases Foundation offers information about PK deficiency, as well as references to websites and social media for most blood diseases.
Visit SiteEstablished to offer an improved public health services to professional medical practitioners and patients in every aspect of rare anemias.
Visit SiteThis advocacy group offers information about hemoglobin disorders, including PK deficiency.
Visit siteMetabolic 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 SiteWhile these materials were not created for people with PK deficiency, they contain useful information to anyone living with a chronic condition.
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 SiteAdvice and resources specifically for caregivers of children with a chronic illness.
Visit SiteGEMSS 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 SiteThis document from the Immune Deficiency Foundation can help facilitate communication among parents, students, and school personnel.
Download ToolWhile 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 ToolIntended 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 ToolResources 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 SiteThis article provides information about children with chronic illnesses, extended illness, and the accommodations specified in a 504 plan.
Read the Article