Let’s Thrive

Thrive & UCSF Benioff Children’s Hospital Announce Partnership

 By Dan Carnine

Thrive with Pyruvate Kinase Deficiency Organization, a non-profit organization based out of Minneapolis, MN, dedicated to supporting individuals and families affected by pyruvate kinase deficiency (PK deficiency/PKD), has announced a strategic partnership with UCSF Benioff Children’s Hospital, Oakland, CA. The collaboration aims to develop comprehensive standards of care guidelines to enhance the management and support available to patients and caregivers living with PKD.

PK deficiency is a rare genetic disorder characterized by the impairment of the pyruvate kinase enzyme, which plays a vital role in red blood cell metabolism. This condition leads to chronic hemolytic anemia, causing fatigue, jaundice, and other complications. Thrive with PKD Organization works tirelessly to raise awareness, provide resources, and improve the lives of those affected by this rare disorder.

UCSF Benioff Children’s Hospital, known for its expertise in pediatric healthcare, has joined forces with Thrive with PKD Organization to leverage their combined knowledge and experience in developing comprehensive standards of care. The collaboration brings together medical professionals, researchers, patients, and caregivers to establish guidelines that will address the various aspects of managing PK deficiency effectively. The standards of care guidelines will provide a framework for healthcare professionals, outlining best practices for diagnosis, treatment, and ongoing care of people with PKD.

This collaborative effort aims to improve the quality of life for patients by promoting standardized, evidence-based care across medical institutions. The collaboration will involve a multidisciplinary team of medical professionals, including hematologists, geneticists, nurses, and patient advocates. Their collective expertise will contribute to the development of guidelines that encompass various aspects of PKD management, such as diagnostic strategies, treatment options, nutrition guidelines, and psychosocial support for patients and caregivers. The standards of care guidelines will be designed to prioritize patient-centered care, providing comprehensive support for PKD patients throughout their lifespan.

As the collaboration progresses, both organizations plan to engage with the PKD community, seeking input from patients, caregivers, and other stakeholders to ensure that the guidelines reflect the needs and experiences of those directly affected by the condition. The establishment of comprehensive standards of care guidelines for PKD represents a significant step forward in enhancing the quality of care and support available to patients and caregivers.

Thrive with PK Deficiency Organization and UCSF Benioff Children’s Hospital’s partnership exemplifies the power of collaboration in making a positive impact on the lives of individuals living with rare genetic disorders like PK deficiency.