Haemcast

They say old age isn't so bad when you consider the alternative... In this episode, host Luke Pembroke (Haemnet's Director of Community Engagement) is joined by community members Dr William McKeown (Geriatrics SpR, Belfast, Northern Ireland) and Randall Curtis (Advocate and Researcher, California, USA) to discuss the potential challenges the bleeding disorder community are set to face with an increasing ageing population. What co-morbidities can we expect to encounter more often and how should these be managed in people with haemophilia? How can a bleeding disorder exacerbate aspects of frailty? What should we prioritise as a community as we venture into the relatively uncharted territory of ageing people with bleeding disorders? Tune in to the full episode to hear our guests' thoughts and insights on how those with bleeding disorders can age well. Be sure to connect with us on LinkedIn and Twitter to share your thoughts on this episode. You can also send us a line by email - [email protected]

In this International Women's Day episode of Haemcast, two influential women leaders in the community, host Dr Kate Khair and Dawn Rotellini of the National Hemophilia Foundation (USA) discuss the challenges and barriers to diagnosis, treatment and care for women with bleeding disorders. Dawn shares her personal story and the obstacles she had to overcome as a haemophilia mum and person with a bleeding disorder, as well as discussing her advocacy efforts and achievements at a national and global level. Do we need to rethink the multidisciplinary care model in the context of treating women with bleeding disorders? Have we moved past the classification of "just carriers"? Would we do better to consider individuals at a bleeding phenotype level as opposed to bracketing people in to categories based on purely factor levels? Listen in to this episode to hear Kate and Dawn's thoughts on these issues. You can watch the full Cinderella Stories Series on our YouTube channel. And to find out more about the Cinderella Study check out the full publication in the Haemophilia Journal You can connect with Haemnet on Twitter and LinkedIn or send us an email: [email protected]

"Shared decision making" has quickly become the new phrase bandied about at event and conferences within the haemophilia community. But what does shared decision making in haemophilia and bleeding disorders really look like? In this episode, our host Dr Kate Khair deep dives in to this topic with Dr Len Valentino, CEO at the National Hemophilia Foundation (USA), exploring what shared decision making really means in this community and why, in this evolving treatment landscape, this is drawing so much focus and attention. There is a need to shift away from the paternalistic healthcare professional and patient relationship, and to engage patients in a dialogue about their treatment, care and goals. This is at the heart of shared decision making.  If you enjoyed this episode, please do share it with your peers and colleagues, and consider leaving a rating or review wherever you listen to your podcasts. You can also connect with us on Twitter!  We'd like to hear your thoughts around the topic of shared decision making. Check out NHF's Blue Sky Vision: Community Conversation here.

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 [email protected]

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 ([email protected]). Follow us on Twitter! @haemnet