PK Deficiency Resources
Finding What You Need

Having PK deficiency or caring for someone with a rare disease can feel isolating. But a growing community of support is available to you. Here are a few ways to reach out.

Talking With Others About PK Deficiency

Explaining the disease to someone can be challenging - both because it's a complicated disease and also because it can be uncomfortable to discuss health issues.

However, sometimes it's necessary to explain to friends, teachers, or employers that you need to take time for treatment. You may find the resources below helpful when having these discussions.

Download a fact sheet that explains to others what PK deficiency is.

Coming Soon
Online Groups

National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders is dedicated to helping people with rare diseases and assisting the organizations that serve them.
Website: www.rarediseases.org

European Organisation for Rare Diseases (EURORDIS)
EURORDIS is a non-governmental patient-driven alliance of patient organizations representing 716 rare disease patient organizations in 63 countries covering over 4000 diseases.
Website: www.eurordis.org

Canadian Organization for Rare Disorders (CORD)
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.
Website: www.raredisorders.ca

European Network for Rare and Congenital Anaemia (ENERCA)
Established to offer an improved public health service to professional medical practitioners and patients in every aspect of rare anemias.
Website: www.enerca.org

Pyruvate Kinase Deficiency Group
Established by people who themselves have PK deficiency, this online organization is committed to providing access to straightforward information about this disorder.
Website: www.pyruvatekinasedeficiency.com
Facebook Support Group: http://www.facebook.com/groups/50217858779

Social Media
Follow us on Twitter and Facebook to keep up to date on the latest PK deficiency news.
Speaking Out

Here's what other people living with PK deficiency are saying about how the disease affects them day-to-day and what they've experienced.

“The disease makes life tough. It’s not so much feeling bad, which I do. I work 15 hours a day, and I also have to fit in chelation, finances, living a normal life, blood draws, medication, a social life and my husband. But I do it!”
“My diagnosis was easier on my folks because my sister had it.
They knew to test for it.”
“I’ve done it all. Splenectomy at age 2. Chronically transfused at age 16 every 3 months. Chelation with subcutaneous shots I gave myself.”

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