Haemcast – Details, episodes & analysis

In the first part of a six-part mini-series, Terence O’Rourke looks back on his childhood memories of living with severe haemophilia, including his education and experience of treatment.

Terence, who is now in his 80s, has an exceptional mind and has enjoyed a successful career. Over the course of this series he reflects on how his relationship with haemophilia has both impacted and shaped his approach to life, from childhood through adulthood.

Credits:

Speaker: Terence O’Rourke

Interviewer: Dr Meila Roy

Producer: Chris Caton

Music: Once Again Royalty Free Music by Benjamin Tissot via bensound.com

In this episode of Haemcast, we speak to our very own Dr Kate Khair following her Lifetime Achievement award at EAHAD 2024.

Tune in to hear about Kate's journet into nursing, the first patient she met with a bleeding disorder and how they influenced her career, and the many years dedicated to researching the lived experience of those with haemophilia and bleeding disorders. You don't want to miss out on hearing from one of the undisputed legends of the bleeding disorders community.

Be sure to follow us on Twitter & LinkedIn, and you can support Haemcast by sharing this episode on your social media platforms.

In this episode of Haemcast, host Dr Kate Khair speaks with Nicola Redfern, former UK General Manager and Northern European cluster lead at bluebird bio and experienced leader in the biopharmaceutical industry, having worked across oncology, rare diseases and ATMPs. We discuss the considerations and challenges when it comes to access of gene therapies, and what the bleeding disorders community can do to ensure these innovative treatments are accepted by payers and become a real option for patients.

Connect with Nicola on LinkedIn

Comments or questions about the show? Connect with us on Twitter and LinkedIn or send us a line to hello@haemnet.com

Professor Graham Foster (Professor of Hepatology at Queen Mary University of London and clinical lead for Hepatology at Barts Health) joins us in this episode of Haemcast to discuss considerations around liver health within the haemophilia and bleeding disorder community,  provides an insight in to why the liver must be carefully monitored during gene therapy trials, and suggests how we might improve and tailor these monitoring techniques to improve patient experience... as well as sharing some useful advice and consideration on how we can ALL take care of our liver. 

Check out Haemnet's liver health animation here!

Be sure to leave Haemcast a review or rating and engage with us on Twitter @haemnet to share your thoughts on this episode and suggest future topics and guests!

In this episode of Haemcast, our host Dr Kate Khair speaks with Alison Dougall, President of the International Association for Disability and Oral Health (iADH) and Consultant/Professor in Special Care Dentistry at Dublin Dental University Dental Hospital about all things oral health and haemophilia and bleeding disorders. In this episode:

• Alison's tells us about her journey from classical pianist to dentistry and a specialist interest in haemophilia and bleeding disorders
• We discuss the importance and challenges of dental care for people with bleeding disorders
• Alison shares the inspiration and process behind her recent chapter publication "The mouth as the gateway to the leaky body: the visibility of internal bleeding in the mouths of people with haemophilia" in Cultures of Oral Health 2022

If you enjoyed this episode please share it with your network and leave us a review on Apple or Google podcasts. 

You can also connect with us on Twitter @Haemnet to share your thoughts about this episode and suggest topics and guests you'd like us to feature in future episodes

Glanzmann's Thrombasthenia (GT) is a rare bleeding disorder, estimated to affect 1 in a million people. Compared to more "common" bleeding disorders such as hemophilia, GT receives a lot less attention when it comes to research and developments. Haemnet recently commenced the Glanzmann's 360 Study which will explore the ways in which GT affects those who live with it and their families. 

During our research we discovered the Glanzmann's Research Foundation (GRF). In this episode of Haemcast, Kate Khair speaks with Taylor Anne Burtz and Peter Zdziarski, President and Vice President of the GRF respectively.

Show notes:

• Take part in the Glanzmann's 360 Study - https://haemnet.typeform.com/to/WStqe1Wb
• Join the Glanzmann's Research Foundation support group - This group is for patients, family members, friends, and doctors of those affected by GT
• Donate to the Glanzmann's Research Foundation

As we celebrate World Hemophilia Day, Dr Kate Khair and guest Agnes Kisakye talk about the Haemophilia Foundation of Uganda and its mission of ensuring access to all

In this episode, Luke Pembroke, Creative Director, Haemnet, speaks with Patrick James Lynch, haemophilia community advocate and Founder of Believe Ltd; a  production company based in LA creating entertainment to affect change in the bleeding disorders and rare disease community. 

Patrick shares the story and inspiration behind founding Believe and shares his insights about the potential of storytelling to educate those living with rare conditions about care, treatment and advocacy, as well as using storytelling to raise awareness amongst the general population. 

Be sure to follow Patrick on Twitter @pjlynch and check out Believe Ltd's work - https://www.believeltd.com/

You can watch the latest (and previous) series of Stop The Bleeding by going to www.stbhemo.com or on YouTube.

We hear a lot about hemophilia within the bleeding disorders community but of course it isn't the only bleeding disorder. In this special Rare Disease Day 2022 episode of Haemcast, Kate Khair speaks with Dr Catherine Rea about Glanzmann's Thrombasthenia, an extremely rare bleeding disorder. We tackle the basics behind how Glanzmann's affects blood clotting and explore the challenges those with the condition face. 

Dr Rea is a senior haematologist within the NHS and part of the development team at Hemab Therapeutics. 

Moving forwards, Haemnet and Hemab will be collaborating on a natural history study to better understand the impact of Glanzmann's on people living with the condition and their families face. To find out more and get involved email Kate (research@haemnet.com).

Follow us on Twitter! @haemnet

You might have seen Haemnet posting about and recruiting for the Exigency Study last year. We found ourselves getting a lot of questions and comments about the study from "what does exigency mean?" to "what is the study about?"... So we invited Lead Investigator, PhD candidate and haemophilia research nurse, Simon Fletcher to give us the low down on the Exigency Study. So listen in to find out more about the experiences of people with haemophilia and gene therapy, qualitative research methods and more. Drop us a Tweet or email if you have any other questions about the study.

Twitter: @haemnet

Email: hello@haemnet.com

Resources:

• An exploration of why men with severe haemophilia might not want gene therapy: The exigency study
• Parental perspectives on gene therapy for children with haemophilia: The Exigency study
• Seeing the bigger picture: Qualitative research in the Zoom® age