Haemcast

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.

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 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