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.

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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.

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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.

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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.

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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.

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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.

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"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:

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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.

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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.

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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. 

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