PODCAST · health
Haemcast
by Haemnet
Welcome to the Haemcast, where we talk about all things haemophilia and bleeding disorders. Join us as we speak with leading experts in the field to tackle and address the latest news, hot topics and research.
Episodes
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When being supported means feeling heard — Two tales from haemophilia mums
Haemcast’s special series in collaboration with Local families with bleeding disorders continues with a reflection on what makes the parents of children with haemophilia feel supported. Mums Melissa and Alex both acknowledge the importance of the ongoing support they have from their sons’...
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Ports, pressure and panic — Coping with haemophilia treatment challenges
In this episode of Haemcast’s special series in collaboration with Local families with bleeding disorders, we look at some of the challenges that can arise when treating a child with haemophilia. Getting used to administering treatment can be challenging, particularly in the early days. Until...
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"I'm the worrier in our relationship" — Being the partner of a person with a bleeding disorder
The next in our special collaboration between Haemcast and Local families with bleeding disorders focuses on the partners of people who live with haemophilia and von Willebrand disease. Anya, Emma and Tom agree that while bleeding disorders are significant in their lives, they don’t define their...
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"Everything's new with haemophilia" — Treatment choices and changes
When making choices about treatment for a bleeding disorder, for a child or for yourself, what matters most? In this episode of Haemcast’s special series in collaboration with Local families with bleeding disorders, we speak with parents about the considerations that come into play when making...
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Sticky blood, teddies and teens — Talking to children about their bleeding disorder
When it comes to managing family life with a child who has a bleeding disorder, parents aren’t just caregivers – they’re organisers, advocates and educators. Alongside managing their child’s condition, they have to help them understand it too. In this episode of Haemcast’s special series in...
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Veins, verse and voices: How poetry helped Local families with bleeding disorders be heard
The first in a special Haemcast series in collaboration with Local families with bleeding disorders, exploring aspects of family life. In this episode, members of Local families with bleeding disorders discuss the online workshops that helped them explore their experiences and express their…
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Banana sap, mangos and factor IX — a Ugandan haemophilia B journey
Morris Okello lives in Northern Uganda. In this episode of Haemcast, he tells Dr Kate about the childhood experiences that eventually led to him being diagnosed with haemophilia B. As well as describing his own journey towards becoming an advocate for people with haemophilia in Uganda, Morris...
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Quality of life in the balance: Helen Tate on living with Factor V deficiency
Dance teacher and Haemophilia Society trustee Helen Tate talks with Haemnet's Dr Kate Khair about living with Factor V deficiency, a rare bleeding disorder that affects around one in a million people. Helen leads an active life despite her condition and is a passionate advocate for the rare...
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Looking back on Terence's life: Haemophilia then and now, with Kate Khair
Following our six-part mini-series 'Reflections on a life with severe haemophilia', with Terence O'Rourke, Haemnet's Dr Kate Khair considers some of the things that have changed in haemophilia care during Terence's lifetime – and some of the things that perhaps haven't. Kate discusses the...
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Reflections on a life with severe haemophilia. Part 6: Decision-making and teamwork
The final part of our mini-series featuring Terence O'Rourke, in which he reflects on living with severe haemophilia A. In this episode, Terence discusses his approach to making decisions about treatment, and the importance of teamwork in both his working life and in relation to his haemophilia...
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Reflections on a life with severe haemophilia. Part 5: Treatment impacts, life changes and hepatitis C
In part 5 of Terence O'Rourke's story, he again reflects on his working life and how this was impacted by both his haemophilia and its treatment. He discusses his approach to and choices about treatment and managing his haemophilia, and about eventually overcoming hepatitis C. Terence continues…
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Reflections on a life with severe haemophilia. Part 4: The arrival of Factor VIII and an evolving career
In part 4 of our mini-series in conversation with Terence O'Rourke, he reflects on changes in treatment for haemophilia and the arrival of Factor VIII. Terence describes some of the prejudice he experienced as a person with haemophilia, and the faith his wife had in him. He also discusses the...
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Reflections on a life with severe haemophilia. Part 3: Work, study and challenging treatment decisions
In the third part of our conversation, Terence O’Rourke looks back on his young adulthood in the late 1950s and early 1960s, starting work in an architect’s office and becoming a student. This was an important time for Terence. He was studying with his peers for the first time and embarking on…
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Reflections on a life with severe haemophilia. Part 2: Education and dreams of the future
We rejoin Terence O'Rourke to as he reflects on growing up with haemophilia, not being able to go to school, his education, and the impact of this on his life. Now in his 80s, Terence also looks back on his career aspirations and goals. What comes through is his determination to pursue these...
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Reflections on a life with severe haemophilia: In conversation with Terence O ’ Rourke
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…
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In conversation with Kate Khair: reflecting on a lifetime's achievement in haemophilia and bleeding disorders
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...
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Pathway to Cures; the venture philanthropy fund focused on transformative treatments for inheritable blood disorders ft. Len Valentino and Teri Willey
In this episode, host Luke Pembroke (Director of Community Engagement, Haemnet) sat down with Len Valentino (P2C Chief Executive Officer; and NBDF President & CEO) and Teri Willey (P2C Managing Director) to hear more about the Pathway to Cures; a venture philanthropy fund created specifically to...
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"Keep speaking their names. Keep remembering them." - Commemorating World AIDS Day 2023 ft. Mark Ward, LGBT Ambassador,The Haemophilia Society UK
In this episode we commemorate World AIDS Day 2023. Host, Dr Kate Khair is joined by contaminated blood scandal campaigner and The Haemophilia Society UK's LGBT Ambassador to discuss the impact HIV and AIDS has had on the bleeding disorders community. Mark generously shares his personal…
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Von Willebrand what?... Disease? Disorder? Dismissed? - featuring community advocates Sunny Maini & Hannah Yarnall, The UK Haemophilia Society
In this episode, Director of Community Engagement, Luke Pembroke, and Director of Research, Kate Khair spoke with community advocates Sunny Maini and Hannah Yarnalll. Sunny and Hannah share their experiences of living with von Willebrand Disorder (VWD), their journey in to the world of advocacy…
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Psychologist Sylvia von Mackensen shares how her leap from sick buildings led her to become the guru of quality of life in haemophilia
From the development of standardised tools, their benefits and limitations, through to the challenges and changes we face in assessing quality of life for people with haemophilia and bleeding disorders as we move in to a new era of treatment. Tune in to hear from a leading expert in the field In...
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The Qualitative Revolution has Begun | Creative Qualitative Research feat. Dr Rich Gorman, Social Scientist at at Brighton and Sussex Medical School
Qualitative research is increasingly challenged to think creatively and critically about how accounts of lived experience might be collected, curated, and shared. Historically it could be said that qualitative research has been somewhat disregarded and undervalued. However, in recent years the...
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What does ageing well with haemophilia look like? | featuring Dr William McKeown and Randall Curtis
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…
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International Womens Day 2023 - The challenges faced by women in the bleeding disorders community ft. Dawn Rotellini, NHF
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...
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Shared decision making in an evolving treatment landscape for haemophilia and bleeding disorders ft. Dr Len Valentino, CEO National Hemophilia Foundation
"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...
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Beyond approval | Considerations and Challenges in Access to Gene Therapy featuring Nicola Redfern
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...
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Gene Therapy, Liver Health and... cheese featuring Professor Graham Foster Professor of Hepatology at Queen Mary University of London and clinical lead for Hepatology at Barts Health
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…
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Tinkling the Ivories | Oral health in haemophilia and bleeding disorders ft. Alison Dougall, Professor/Consultant Dublin Dental University Hospital, Director of SCD doctorate programme Trinity College
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...
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Same but different; the challenges faced by the Glanzmann's Thrombasthenia community feat. The Glanzmann's Research Foundation
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…
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WHD African Update: Dr Kate Khair speaks to Agnes Kisakye of the Haemophilia Foundation of Uganda
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
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Using Storytelling to Educate and Empower the Hemophilia & Bleeding Disorders Community ft. Patrick James Lynch, Founder & CEO, Believe Ltd
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...
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The 1 in a Million Bleeding Disorder: Glanzmann's Thrombasthenia w/ Dr Catherine Rea
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...
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What is the Exigency Study? feat. Lead Investigator & Research Nurse Simon Fletcher, Oxford University Hospitals NHS Trust
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...
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Risk-benefit assessment for Gene Therapy in Haemophilia ft. Declan Noone, EHC President
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...
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Universal precautions; not gloves and aprons but health literacy and shared decision making ft. Jonathan Berry. NHS Improvement, Personalised Care Group
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...
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Some is good, more is better | physical activity in haemophilia feat. Melanie Bladen & Ruth Elise Matlary
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...
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Trauma and Pain Memories in Haemophilia
In this episode we are joined by clinical psychologist, Sarah Whitaker and physiotherapist, Anna wells from the Basingstoke Haemophilia Centre. What are the potential traumatic experiences someone with a bleeding disorder may experience? How may these experiences create lasting pain memories? Is...
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The Birds and the Bleeds | Sex and sexual health in the bleeding disorders community
In this episode of Haemcast, host Dr Kate Khair and specialist nurses April Jones and Jo Swidenbank discuss the issues people within the bleeding disorders community face when it comes to sex, sexual health and identity. Our guests also explore the the challenges, as well as solutions, for when…
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Celebrating International Nurses Day 2021 with the haemophilia nursing community
In this episode of Haemcast, hosted by Dr Kate Khair, we hear from haemophilia nurses around the world to celebrate International Nurses Day 2021. From Europe to Canada and all the way to New Zealand, our guests share their thoughts on what makes a good haemophilia nurse, how they have adapted in...
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World Haemophilia Day | How the UK Community Adapted to Change
"Adapting to Change, sustaining care in a new world." That's the theme for World Haemophilia Day this year and in this special episode, Luke Pembroke, Haemnet Comms Officer, speaks with members of the UK Bleeding Disorder community about how they have had to adapt to change during the past year…
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Women Bleed Too! - Dr Abdul-Kadir, Dr van Galen & Naja Skouw-Rasmussen on the WGBD Principles of Care and more
Following the release of the European Principles of Care for Women and Girls with Bleeding Disorders last month, Haemnet's Director of Education, Debra Pollard discusses why this is an important step for the community with expert guests, Naja Skouw-Rasmussen (EHC), Dr Rezan Abdul-Kadir…
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Complexities and Conundrums in Consent w/ Dr Nicola Curry and Dr Keith Gomez
How can genetic testing complicate consent in clinical practice? When is genetic testing appropriate for a patient? Is it time to rethink what we mean by consent for people with haemophilia and bleeding disorders? In this Haemcast, host Dr Kate Khair is joined by Dr Nicola Curry (Consultant...
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We don't ask. They don't tell - Pain and haemophilia (Part 2)
In part 2 of this Haemcast focusing on pain in haemophilia host Dr Kate Khair, uncovers some of the ways people with haemophilia manage their pain, with expert physios Nathalie Roussel (University of Antwerp, Belgium) and Paul McLaughlin (The Royal Free Hospital, London, UK), as well as exploring...
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We don't ask. They don't tell - Pain and haemophilia (Part 1)
The first ever Haemcast!... and the first in a two part episode exploring the hot topic of 'pain' within haemophilia. Our host, Dr Kate Khair, is joined by haemophilia physiotherapists and pain experts, Nathalie Roussel (University of Antwerp, Belgium) and Paul McLaughlin (The Royal Free…
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Frequently Asked Questions
How many episodes does Haemcast have?
Haemcast currently has 43 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is Haemcast about?
Welcome to the Haemcast, where we talk about all things haemophilia and bleeding disorders. Join us as we speak with leading experts in the field to tackle and address the latest news, hot topics and research.
How often does Haemcast release new episodes?
Haemcast has 43 episodes. Check the episode list to see recent publication dates and frequency.
Where can I listen to Haemcast?
You can listen to Haemcast on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts Haemcast?
Haemcast is created and hosted by Haemnet.
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