Psychologist Sylvia von Mackensen shares how her leap from sick buildings led her to become the guru of quality of life in haemophilia

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

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]