Today we’re talking to two rare disease patients who are accomplished advocates. We will hear their ups and downs with self advocacy and the steps they include when crafting their stories whether in a clinician’s office or their professional lives. 

We hear from Bianca Basset who lives with PKD, is a disability consultant from Australia and author of the book “Walking My Path…Building Memories”. We also hear from  Patrick James Lynch, a filmmaker and a patient advocate who lives with severe hemophilia A. He is the co-founder and CEO of Believe Limited, a content agency that produces entertainment to affect change. 

Patrick and Bianca are both professional storytellers. We’ll hear the unique ways both of them craft their stories over the years.

 

World Blood Donation Day is June 14, 2022. Please donate if you can.

 

Connect with Patrick James Lynch:

LinkedIn

BloodStream Podcast

Global Hemophilia Report

 

Connect with Bianca Bassett :

Website

Instagram

 

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 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 and guests featured in this episode have been compensated for their time.

 

Produced by BloodStream Media