Haemcast

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!

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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

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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 ([email protected]).

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: [email protected]

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

Declan Noone, President of the European Haemophilia Consortium (EHC) joins Haemcast hosts, Dr Kate Khair and Luke Pembroke to discuss the complexities surrounding risk-benefit assessment when making a decision around gene therapy. From considering the patients' and healthcare professional perspectives to the regulators and payers, thorough risk-benefit assessment processes will be required in order to make informed decisions about gene therapy for haemophilia. But what is needed from the community to support these decision making processes? How can we ensure equal access and opportunity to gene therapy in the future? How do we begin to try quantifying the benefits of gene therapy without focusing solely on annual bleed rates and factor levels? Listen in to hear the thoughts of our experts in this final episode of Haemcast for 2021.

Thank you to all of our listeners throughout the year for tuning in and supporting Haemcast. The feedback we have received has been amazing and confirmed that it serves as a valuable resource for the community. If you want to help supporting us, please do leave us a review and rating on the platform you listen on e.g. Apple podcasts, Spotify and be sure to share Haemcast with your colleagues and friends.

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In this episode of Haemcast, hosts Dr Kate Khair and Luke Pembroke discuss the topic of health literacy with Jonathan Berry from NHS England and NHS Improvement. The challenge of educating and engaging patients about their care within bleeding disorders is a pressing issue receiving increasing attention as we begin to see new treatments being developed. There is an unmet need to improve health literacy levels for people living with long-term conditions such as haemophilia. Jonathan shares the challenges, concerns and potential solutions he has come across whilst working within the NHS Improvement, Personalised Care Group.

What did you think of this episode? Chat with us on Twitter @haemnet!

In this episode our host Paul McLaughlin, physiotherapist at The Royal Free Hospital London, speaks with fellow expert physios, Melanie Bladen (Great Ormond Street Hospital, London) and Ruth Elise Matlary (Oslo University Hospital, Norway) about physical activity in people with haemophilia.

Our guests explore the potential barriers, worries, facilitators and outcomes when someone with haemophilia does or does not decide to be active due to their condition, as well as discussing what has changed now in an era of minimal bleeding whilst on treatment and if we really are on the edge of "normality" when it comes to physical activity.

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