On this episode, we discuss the Pyruvate Kinase Deficiency Advocacy Advisory Council, (AAC), an international, multi-disciplinary group of experts including patients, caregivers, patient advocates and clinicians. The AAC launched a survey, which received 275 respondents from 11 countries, making it the largest of its kind for this community which resulted in a White Paper. The White Paper shares the results of the international survey exploring communication between PK deficiency patients and caregivers and their hematologists. Agios funds and supports the AAC.

We speak with AAC member, Dr. Rachael Grace, a pediatric hematologist and a clinical researcher at the Boston Children's Cancer and Blood Disorders Center about the AAC and the White Paper. We also hear from former guests Tamara Schryver and Carl Lander of Thrive with PK Deficiency Patient Organization (thrivewithpkd.org) as well as Alejandra Watson and Laura Miller-D'Angelo of the Pyruvate Kinase Deficiency Foundation (pkdf.org) who are also AAC members.

To read the AAC White Paper, Pyruvate Kinase Deficiency: Reflections on the Patient Experience to Support Treatment and Care white paper go to: https://thalassaemia.org.cy/pk-deficiency/. 

SHOW DESCRIPTION

Just Listen: Voices of PK Deficiency is a podcast about pyruvate kinase deficiency (PK Deficiency) and is intended for patients, caregivers, providers, and the greater community of people who are impacted by PKD.  Each episode, Just Listen: Voices of PK Deficiency strives to provide listeners with critical education, the latest scientific updates, and voices from the PKD community.  Learn more about PKD by visiting KnowPKDeficiency.com or connect with KnowPKDeficiency’s on Facebook: bit.ly/KnowPKD.

 

TRANSPARENCY STATEMENT

Just Listen: Voices of PK Deficiency and KnowPKDeficiency.com are made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Host and guests featured in this episode have been compensated for their time. 

Produced by BloodStream Media