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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, and providing access to treatment and care. CREDITS: Speaker: Morris Okello Griffin Interviewer: Dr Kate Khair Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠⁠⁠bensound.com⁠

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 limited, and what she thinks needs to change to improve life for everyone who lives with a rare bleeding disorder. CREDITS: Speaker: Helen Tate Interviewer: Dr Kate Khair Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠⁠bensound.com⁠

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, treatment decisions, feeling isolated, and the importance of support and understanding. CREDITS: Speaker: Dr Kate Khair Interviewer: Kathryn Jenner Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠bensound.com⁠

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 Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠bensound.com⁠

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. 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 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: Terence O’Rourke Interviewer: Dr Meila Roy Producer: Chris Caton Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠bensound.com⁠

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 haemophilia was treated during this time – and how he questioned the accepted methods of treating bleeds at a time when most people accepted that doctors knew best.   CREDITS: Speaker: Terence O’Rourke Interviewer: Dr Meila Roy Producer: Chris Caton Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠bensound.com⁠

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: Speaker: Terence O'Rourke Interviewer: Dr Meila Roy Producer: Chris Caton Music: Once Again Royalty Free Music by Benjamin Tissot via bensound.com

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, 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 products. After taking to the skies to pursue his dream of working in the air travel sector, Mark hung up his cabin crew uniform to become one of the leading community advocates, campaigning for justice of those affected by contaminated blood and serving as the worlds first recognised LGBT Ambassador in the hemophilia and bleeding disorders world. More about Mark Ward - https://haemophilia.org.uk/who-we-are/people/mark-ward/ More about World AIDS Day - https://worldaidsday.org/

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 Society UK. For more information about the VWD working group and their upcoming event in Sheffield on 26th August, you can contact Sunny via email: [email protected]

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 journey in to haemophilia and bleeding disorders focusing on quality of life assessment. Connect with us on Twitter and LinkedIn

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 diseases has grown. As specialists in this form of research, the Haemnet team have championed these approaches through many of our studies and projects in hemophilia and bleeding disorders. We remain curious about how this field continues to evolve and adapt. In this episode, Haemnet's Director of Community Engagement, Luke Pembroke discusses the creative approaches to qualitative research Dr Rich Gorman (Research Fellow and Social Scientist, Brighton and Sussex Medical School) as and his colleagues experimented with in recent years, employing the power of the arts to uncover unique insights in to the lived experiences of those affected by rare genetic conditions. Show notes: "Writing the worlds of genomic medicine: experiences of using participatory-writing to understand life with rare conditions" - https://mh.bmj.com/content/48/2/e4 "Stop-motion storytelling: Exploring methods for animating the worlds of rare genetic disease" - https://doi.org/10.1177/14687941221110168 Capturing Quality of Life after Gene Therapy - https://www.haemnet.com/blog/quality-of-life-after-hemophilia-gene-therapy/ Rich on Twitter: https://twitter.com/SustainableRich