Written by Laura Mullen on April 28, 2020
“…As we pull into the hospital, she starts screaming that she doesn’t want to be there, and she wants to be home… No matter how much her doctors want to make her feel better, and she’s also three, so it’s hard to explain to her that this will… Read More
Written by Laura Mullen on January 23, 2020
Washington, DC, January 23, 2020–The National Organization for Rare Disorders (NORD)®, the Foundation for Rare Blood Diseases (SZB) and the pyruvate kinase deficiency community together made history on September 20, 2019 with patients and families sharing their experiences directly with the US Food and Drug Administration (FDA) and other key… Read More
Written by Lisa Sencen on September 20, 2019

NORD and the Foundation for Rare Blood Diseases (SZB) invite you to an externally-led Patient Focused Drug Development (EL-PFDD) meeting on pyruvate kinase deficiency, taking place Friday, September 20, 2019.
If you are a patient, family… Read More
Written by Lisa Sencen on July 11, 2019
NORD and the Foundation for Rare Blood Diseases (SZB) invite you to register for an externally-led Patient Focused Drug Development (EL-PFDD) meeting on Pyruvate Kinase deficiency (PKD), taking place Friday, September 20. Scholarships are available to… Read More