Haemcast

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 recently, most haemophilia treatments have been given intravenously, which is a challenge in itself, but o...

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 partners’ identities or their relationships.    They talk about teamwork and living in the moment, an...

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 decisions about haemophilia treatments. They share their treatment stories, expectations and anxieties a...

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 collaboration with Local families with bleeding disorders, parents discuss how they go about talking to thei...

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 hopes, expectations and worries about the bleeding disorders that impact their families. They are joined by...

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 highlights the work of the Ugandan Haemophilia Society in raising awareness, improving rates of diagnosis,...

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 bleeding disorders community. She discusses diagnosis, coping with bleeds when treatment options are lim...

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 importance of remembering times when haemophilia treatment wasn't so readily available, getting a diagnosis,...

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 care. CREDITS: Speaker: Terence O’Rourke Interviewer: Dr Meila Roy Producer: Chris Caton Music: Once Aga...

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 to be driven by determination and confidence in his own problem-solving ability throughout. CRED...

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 progression of his career, and how it shifted and changed around his haemophilia.   CREDITS: Speaker: Te...

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 the early stages of what would become a very successful career.   Terence also reflects on how his hae...

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 despite the obstacles he faced as a young person with haemophilia and limited access to treatment. Credits:...

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 app...

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...

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 accelerate the development of cures across all inheritable blood and bleeding disorders.

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 experience growing up with haemophilia from receiving no treatment, to then receiving contaminated blood pro...

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 and tell us about their latest venture establishing the VWD working group through The Haemophilia Societ...

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 this episode of Haemcast, host Dr Kate Khair speaks to Psychologist Dr Sylvia von Mackensen about her j...

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 potential of qualitative research in helping to better understand the lived experience of those with rare...

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...

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 ble...

"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 maki...

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...

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...