When is this Day? April 30th of each calendar year.
What is National Pyruvate Kinase Deficiency (PKD) Awareness Day? Pyruvate Kinase Deficiency (PKD) is a rare genetic disease causing the early death of red blood cells which causes deceased oxygen delivery to all tissues and organ systems in the body, resulting in a variety of complications. It effects 5 in 300,000 and currently there is no treatment. This national awareness day provides us the opportunity to spread education and awareness about this rare condition.
Why is this day being created? Many with PKD require frequent blood transfusions starting in the first days of life and continuing throughout life. We chose April 30 specifically to both celebrate and demonstrate the lifespan of a healthy red blood cell, which is 120 days on average, and April 30 is the 120th day of the year. In addition, the bone marrow produces approximately 120 million red blood cells in just one minute. Conversely, red blood cells from patients with PK Deficiency only last from a few days to 4-8 weeks. On April 30, we would like to show gratitude to those who have directly impacted the quality of life by donating blood for those with PKD and would like to provide a better understanding of how important their contribution is.
How should this day be observed? Announcements for this day will be disseminated by The Pyruvate Kinase Deficiency Foundation on it’s website and social media networks. All stakeholders including patients and caregivers will be encouraged to do special events or fundraisers to celebrate the day and support the Foundation in providing vital programs to advocate and improve the quality of life for those with PKD.
Who created this day? This day was created by the Pyruvate Kinase Deficiency Foundation in 2022. pkdf.org