60th Year Celebration of PK Deficiency as a Genetic Anemia Conference, November 6-8, 2022
Thank you for attending the first international PK deficiency patient conference. The conference was a huge success! Please return soon for photos and links to presentations. A thousand thank you’s from the Thrive with PK Deficiency Organization Leadership Team!
Thrive with PK Deficiency is partnering with the Thalassaemia International Federation to celebrate 60 years of Pyruvate Kinase deficiency (PK deficiency; PKD) being recognized as genetic anemia. This year marks the 60th anniversary of the first peer-reviewed, published paper in the Blood Journal identifying PK deficiency as a hereditary, nonspherocytic hemolytic anemia.
Since that time, medical science has evolved to make diagnosis easier and provided more options for disease management. Still, it hasn’t been easy for individuals and families living with PK deficiency, a rare disease that affects between 3 to 8 people per million. Many people and families struggle with feelings of isolation, loneliness, and anxiety and have never met another person or family with PKD. While their doctor may provide good care for their condition, it’s often not at the expert level. This celebration marks 60-plus years of the tenacity of people living with this chronic disease despite many barriers.
Thrive’s 60th Year Celebration objectives are:
1) To educate attendees on PKD treatment guidelines and options for children and adults
2) To connect with other people and families that have PK deficiency to help alleviate feelings of isolation and loneliness
3) To build a sense of advocacy to improve our personal health and increase disease awareness in hematology
4) To celebrate 60 years of PKD progress in science and treatment, and the successes of people with PKD.
Please contact us with any questions you may have. We will be updating this website regularly.