Shows
HaemcastIn conversation with Kate Khair: reflecting on a lifetime's achievement in haemophilia and bleeding disordersIn 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...2024-03-2043 min
HaemcastPathway to Cures; the venture philanthropy fund focused on transformative treatments for inheritable blood disorders ft. Len Valentino and Teri WilleyIn 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.
2024-01-0934 min
Haemcast"Keep speaking their names. Keep remembering them." - Commemorating World AIDS Day 2023 ft. Mark Ward, LGBT Ambassador,The Haemophilia Society UKIn 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...2023-12-0139 min
HaemcastVon Willebrand what?... Disease? Disorder? Dismissed? - featuring community advocates Sunny Maini & Hannah Yarnall, The UK Haemophilia SocietyIn 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
2023-08-0944 min
HaemcastPsychologist Sylvia von Mackensen shares how her leap from sick buildings led her to become the guru of quality of life in haemophiliaFrom 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 LinkedIn2023-07-0631 min
Bruised Not Broken: Life with Glanzmann ThrombastheniaGene Therapy, Haemnet & Glanzmann ThrombastheniaTaylor and Peter chat with Luke Pembroke from Haemnet. Luke is the Director of Community Engagement with Haemnet and spearheads their podcast, Haemcast. Haemnet is a specialist research and communications consultancy in the bleeding disorder community. You might be familiar with their name; they conducted the Glanzmann's 360 survey. It was during a podcast interview about the Glanzmann's 360 survey with Luke and their Director of Research, Kate Khair, that Peter and Taylor discovered that Luke was born with severe hemophilia B, and during the pandemic, he was a participant in a gene therapy clinical trial. With Dr. Wilcox's p...2023-05-0653 min
HaemcastThe Qualitative Revolution has Begun | Creative Qualitative Research feat. Dr Rich Gorman, Social Scientist at at Brighton and Sussex Medical SchoolQualitative 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 t...2023-04-1344 min
HaemcastWhat does ageing well with haemophilia look like? | featuring Dr William McKeown and Randall CurtisThey 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...2023-03-2138 min
HaemcastInternational Womens Day 2023 - The challenges faced by women in the bleeding disorders community ft. Dawn Rotellini, NHFIn 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...2023-03-0835 min
HaemcastInternational Women's Day 2023 ft. Dawn Rotellini, National Hemophilia Foundation | Unmet needs for Women with Bleeding DisordersIn 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 d...2023-03-0739 min
HaemcastShared decision making in an evolving treatment landscape for haemophilia and bleeding disorders ft. Dr Len Valentino, CEO National Hemophilia Foundation"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...2023-02-2029 min
HaemcastBeyond approval | Considerations and Challenges in Access to Gene Therapy featuring Nicola RedfernIn 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...2022-11-2836 min
HaemcastGene Therapy, Liver Health and... cheese featuring Professor Graham Foster Professor of Hepatology at Queen Mary University of London and clinical lead for Hepatology at Barts HealthProfessor 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!...2022-10-1427 min
HaemcastTinkling the Ivories | Oral health in haemophilia and bleeding disorders ft. Alison Dougall, Professor/Consultant Dublin Dental University Hospital, Director of SCD doctorate programme Trinity CollegeIn 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...2022-08-2232 min
HaemcastSame but different; the challenges faced by the Glanzmann's Thrombasthenia community feat. The Glanzmann's Research FoundationGlanzmann'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:2022-07-2134 min
HaemcastWHD African Update: Dr Kate Khair speaks to Agnes Kisakye of the Haemophilia Foundation of UgandaAs 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 all2022-04-1724 min
HaemcastUsing Storytelling to Educate and Empower the Hemophilia & Bleeding Disorders Community ft. Patrick James Lynch, Founder & CEO, Believe LtdIn 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 wor...2022-03-2132 min
HaemcastThe 1 in a Million Bleeding Disorder: Glanzmann's Thrombasthenia w/ Dr Catherine ReaWe 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 be...2022-02-2829 min
HaemcastWhat is the Exigency Study? feat. Lead Investigator & Research Nurse Simon Fletcher, Oxford University Hospitals NHS TrustYou 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.2022-01-2827 min
HaemcastRisk-benefit assessment for Gene Therapy in Haemophilia ft. Declan Noone, EHC PresidentDeclan 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...2021-12-2043 min
HaemcastUniversal precautions; not gloves and aprons but health literacy and shared decision making ft. Jonathan Berry. NHS Improvement, Personalised Care GroupIn 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...2021-10-0832 min
HaemcastSome is good, more is better | physical activity in haemophilia feat. Melanie Bladen & Ruth Elise MatlaryIn 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...2021-09-0640 minHaemcastTrauma and Pain Memories in HaemophiliaIn 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...2021-06-2236 minHaemcastThe Birds and the Bleeds | Sex and sexual health in the bleeding disorders communityIn 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.2021-06-0125 min
HaemcastCelebrating International Nurses Day 2021 with the haemophilia nursing communityIn 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.2021-05-1229 min
HaemcastWorld Haemophilia Day | How the UK Community Adapted to Change"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 "...2021-04-1756 minHaemcastWomen Bleed Too! - Dr Abdul-Kadir, Dr van Galen & Naja Skouw-Rasmussen on the WGBD Principles of Care and moreFollowing 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...2021-04-0840 minHaemcastComplexities and Conundrums in Consent w/ Dr Nicola Curry and Dr Keith GomezHow 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...2021-03-0932 minHaemcastWe don't ask. They don't tell - Pain and haemophilia (Part 2)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 2021-02-2221 minHaemcastWe don't ask. They don't tell - Pain and haemophilia (Part 1)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 ou...2021-01-1933 min