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.
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.
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.
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.
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.
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.
Facebook Support Group: http://www.facebook.com/groups/50217858779
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.