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 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 hello@haemnet.com

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 improve and tailor these monitoring techniques to improve patient experience... as well as sharing some useful advice and consideration on how we can ALL take care of our liver. 

Check out Haemnet's liver health animation here!

Be sure to leave Haemcast a review or rating and engage with us on Twitter @haemnet to share your thoughts on this episode and suggest future topics and guests!

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 haemophilia and bleeding disorders. In this episode:

• Alison's tells us about her journey from classical pianist to dentistry and a specialist interest in haemophilia and bleeding disorders
• We discuss the importance and challenges of dental care for people with bleeding disorders
• Alison shares the inspiration and process behind her recent chapter publication "The mouth as the gateway to the leaky body: the visibility of internal bleeding in the mouths of people with haemophilia" in Cultures of Oral Health 2022

If you enjoyed this episode please share it with your network and leave us a review on Apple or Google podcasts. 

You can also connect with us on Twitter @Haemnet to share your thoughts about this episode and suggest topics and guests you'd like us to feature in future episodes

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 Study which will explore the ways in which GT affects those who live with it and their families. 

During our research we discovered the Glanzmann's Research Foundation (GRF). In this episode of Haemcast, Kate Khair speaks with Taylor Anne Burtz and Peter Zdziarski, President and Vice President of the GRF respectively.

Show notes:

• Take part in the Glanzmann's 360 Study - https://haemnet.typeform.com/to/WStqe1Wb
• Join the Glanzmann's Research Foundation support group - This group is for patients, family members, friends, and doctors of those affected by GT
• Donate to the Glanzmann's Research Foundation

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

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 story and inspiration behind founding Believe and shares his insights about the potential of storytelling to educate those living with rare conditions about care, treatment and advocacy, as well as using storytelling to raise awareness amongst the general population. 

Be sure to follow Patrick on Twitter @pjlynch and check out Believe Ltd's work - https://www.believeltd.com/

You can watch the latest (and previous) series of Stop The Bleeding by going to www.stbhemo.com or on YouTube.

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 tackle the basics behind how Glanzmann's affects blood clotting and explore the challenges those with the condition face. 

Dr Rea is a senior haematologist within the NHS and part of the development team at Hemab Therapeutics. 

Moving forwards, Haemnet and Hemab will be collaborating on a natural history study to better understand the impact of Glanzmann's on people living with the condition and their families face. To find out more and get involved email Kate (research@haemnet.com).

Follow us on Twitter! @haemnet

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 research nurse, Simon Fletcher to give us the low down on the Exigency Study. So listen in to find out more about the experiences of people with haemophilia and gene therapy, qualitative research methods and more. Drop us a Tweet or email if you have any other questions about the study.

Twitter: @haemnet

Email: hello@haemnet.com

Resources:

• An exploration of why men with severe haemophilia might not want gene therapy: The exigency study
• Parental perspectives on gene therapy for children with haemophilia: The Exigency study
• Seeing the bigger picture: Qualitative research in the Zoom® age

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 perspectives to the regulators and payers, thorough risk-benefit assessment processes will be required in order to make informed decisions about gene therapy for haemophilia. But what is needed from the community to support these decision making processes? How can we ensure equal access and opportunity to gene therapy in the future? How do we begin to try quantifying the benefits of gene therapy without focusing solely on annual bleed rates and factor levels? Listen in to hear the thoughts of our experts in this final episode of Haemcast for 2021.

Thank you to all of our listeners throughout the year for tuning in and supporting Haemcast. The feedback we have received has been amazing and confirmed that it serves as a valuable resource for the community. If you want to help supporting us, please do leave us a review and rating on the platform you listen on e.g. Apple podcasts, Spotify and be sure to share Haemcast with your colleagues and friends.

Engage with us on Twitter @Haemnet

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 attention as we begin to see new treatments being developed. There is an unmet need to improve health literacy levels for people living with long-term conditions such as haemophilia. Jonathan shares the challenges, concerns and potential solutions he has come across whilst working within the NHS Improvement, Personalised Care Group.

What did you think of this episode? Chat with us on Twitter @haemnet!

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 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 guests explore the potential barriers, worries, facilitators and outcomes when someone with haemophilia does or does not decide to be active due to their condition, as well as discussing what has changed now in an era of minimal bleeding whilst on treatment and if we really are on the edge of "normality" when it comes to physical activity.

If you enjoyed this episode, please check out the other Haemcast episodes, follow/subscribe and leave us a review if you're using Apple or Google podcasts to listen. You can also connect with us on Twitter @haemnet and let us know what you thought about the episode.

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 PTSD not recognised or acknowledged as much as it should be in the bleeding disorders community? Find out in this episode of Haemcast who discuss the topic of trauma, pain memories and PTSD within the bleeding disorders community.

Be sure to follow/subscribe to Haemcast!

Follow us on Twitter @Haemnet and visit www.haemnet.com

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 it comes to speaking with patients about these issues surrounding sex.

Thank you to our sponsors who make Haemcast possible.

Be sure to follow/subscribe to Haemcast and follow us on Twitter @haemnet.

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 the past year and what the future of haemophilia care might look like. 

#InternationalNursesDay.

Thank you to our sponsors who make Haemcast possible.

Be sure to follow/subscribe to Haemcast and follow us on Twitter @haemnet.

www.haemnet.com

"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 in response to the challenges faced.

Featured guests include:

• Haemophilia Nurse Specialist Debra Pollard on conducting clinics from home whilst shielding
• Patient advocate and research fellow Rich Gorman on moving across the country and not yet meeting his new haemophilia team in person!
• Haemnet's master of "creative interference" gives us the low down on Project Phoenix (www.haemnet.com/phoenix)
• Nurse Specialist, April Jones tells us about the challenges the Newcastle Haemophilia team faced with the centre having to relocate
• Lead Clinical Nurse Specialist, Wandai Maposa recollects the ghost town of Tooting mid-pandemic and how scary it was to see members of his team redeployed to ITU.
  

Thank you to our sponsors who make Haemcast possible. 

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 (Consultant Gynaecologist, Royal Free London) and Dr Karin van Galen (Consultant Haematologist, UMC Utrecht). Our guests also dive in to the challenges and barriers women within the bleeding disorders community face, from receiving diagnosis to effective treatment, and what more needs to be done to improve outcomes for these women.

You can view the WGWB Principles of Care webinar here. 

Be sure to share this Haemcast and make sure you're following or subscribed so you don't miss out on future episodes!

Follow us on Twitter - @haemnet

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 Haematologist, Oxford Haemophilia and Thrombosis Centre) and Dr Keith Gomez (Consultant Haematologist, The Royal Free Haemophilia Centre, London) to discuss these complex issues and more.

If you have any questions, comments and suggestions about Haemcast, drop us a line - hello@haemnet.com 

Be sure to follow @Haemnet on Twitter, subscribe/follow Haemcast wherever you're listening.

www.haemnet.com

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 the hopes for the future of pain management and research within haemophilia. 

Be sure to subscribe and follow Haemcast so you don't miss future episodes as they're released.

Find out more about what we do at www.haemnet.com. Follow us on Twitter: www.twitter.com/haemnet 

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 Hospital, London, UK) to discuss mechanisms of pain, the challenges in assessing and managing pain,  and think about the ways we as treaters can improve outcomes for patients.

Be sure to subscribe and follow Haemcast so you don't miss Part 2 and future episodes.

Find out more about what we do at www.haemnet.com

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.

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 - hello@haemnet.com

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: hello@haemnet.com

"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.

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