Haemcast Haemnet

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.



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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: sunny@haemophilia.org.uk

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.



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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