Our mission is to connect the Pyruvate Kinase Deficiency community through support, increased social awareness, and advocacy.
Thrive with Pyruvate Kinase Deficiency Organization was founded on principles of resourcefulness, transparency, and connectedness. Content for this site is curated from pharma, research, healthcare, and nonprofit organizations to help you and your family manage PK deficiency. Please join us in building a PKD resource hub that supports the diverse perspectives of the community. Additional content may be considered by emailing firstname.lastname@example.org with a link to the resource.
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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.
EHA 2023- Register now!
BY DAN CARNINE
Thrive with Pyruvate Kinase Deficiency is pleased to provide a compilation of the latest abstracts on the rare disease pyruvate kinase deficiency (PK deficiency), which will be discussed at this year’s European Hematology Association (EHA) Congress.
EHA 2023 will be held in person June 8-11th in Frankfurt, Germany, and is also available live stream on the Congress platform June 8-11th, with additional virtual days from June 14-15th, 2023. The Congress platform will remain open for registrants until August 15, 2023.
PK deficiency is a rare blood disorder that affects the function of red blood cells and can result in anemia, jaundice, iron overload, and other adverse health outcomes. Leading researchers and hematologists will be presenting their latest findings on the diagnosis, management, and treatment of pyruvate kinase deficiency.
We invite all individuals and families affected by PK deficiency, healthcare professionals, researchers, and advocates to download PKD-related abstracts in advance. The abstracts provide valuable insight into the disease pathogenesis and its potential therapies, and offer opportunities for collaboration and networking for those in attendance. Register now for EHA’s Congress to advance knowledge and improve patient care for all who suffer from pyruvate kinase deficiencies.
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Check out our YouTube channel, which hosts a collection of relevant videos about PKD and the people living with it.