On this episode, guest host Janie Davis, Director of Patient Advocacy at Agios Pharmaceuticals, discusses the Life Stage Model initiative with patient advocacy leaders, Tamara Scriver and Alejandra Watson. They delve into the work of the PKD Advocacy Advisory Council (AAC) and how it addresses the unmet needs of the community. The conversation highlights the development of the Life Stage Model, which categorizes the physical and psychosocial symptoms of PKD across different life stages.

SHOW DESCRIPTION

Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase 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 on Facebook: bit.ly/KnowPKD and Instagram shorturl.at/gmFT4.

Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram.

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. Guests Tamara Schryver and Alejandra Watson have been compensated for their time.

On this episode of Just Listen: Voices of PK Deficiency, guest host Janie Davis (Director, Patient Advocacy at Agios) is joined by special guests Tamara Schryver, Jill Welle, and Alejandra Watson to discuss the impact and organization of the second international PKD Conference. They share their experiences, the importance of international collaboration, and key moments from the event that empowered the PKD community through advocacy, education, and personal connections. The guests also reveal future plans, including a merge of PKD organizations to form the Pyruvate Kinase Deficiency International Alliance, aiming to expand global outreach and support.

SHOW DESCRIPTION

Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase 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 on Facebook: bit.ly/KnowPKD and Instagram shorturl.at/gmFT4.

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. Guests, Jill Welle, Tamara Schryver, and Alejandra Watson have been compensated for their time.

his episode, Dr. Rachael Grace welcomes back Tamara Schryver, PhD, RD, President of Thrive with PK deficiency, to discuss the essential role of nutrition and physical activity for individuals with PK deficiency. They explore the importance of iron management, vitamin intake, and tailored dietary plans developed by registered dietitians. Dr. Schryver offers insights into working with picky eaters and integrating physical activity to ensure overall health and bone density. This informative conversation emphasizes the value of a team approach, including hematologists and dietitians, for managing PK deficiency.

For more information about nutrition and PK deficiency, click here.

SHOW DESCRIPTION

Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase 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 on Facebook: bit.ly/KnowPKD and Instagram shorturl.at/gmFT4.

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 Rachael Grace and guest, Tamara Schryver have been compensated for their time.