Haemnet
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Voltaire Road, London
London SW46DH
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Haemnet supports health and social care professionals to ensure that excellent care becomes an everyd
Haemnet is a specialist research and communications consultancy embedded in the bleeding disorders community. We undertake research relevant to patients and their families, we communicate on the things that matter in bleeding disorders, and we enable the community to share their experience to expand knowledge.
HUGE congratulations to this amazing team! The PR3 Mixed Cox Four finals was a very exciting final to watch on Sunday at the Paralympics. Ed Fuller has haemophilia and is an inspiration to anyone with a bleeding disorder who wants to participate in sport.
đ„ GOLD for the PR3 Mixed coxed four at the 2024 Paris Paralympic Games! đŹđ§
The crewđ
Frankie Allen (Oxford Brookes University Boat Club)
Josh OâBrien (Molesey Boat Club)
Giedre Rakauskaite (Worcester Rowing Club)
Ed Fuller (Reading University Boat Club / Nautilus RC)
Erin Kennedy (cox) (Leander Club)
Coach: Nicola Benavente
đž Benedict Tufnell
The National Lottery ParalympicsGB
Fantastic to see the PR3 Mixed Cox Four, including Ed Fuller, achieving a world best time in the heats at the Paralympics today! We're looking forward to the final on Sunday!
đEd's Paralympic journey continues!đ
A huge congratulations to Ed Fuller and the PR3 Mixed Coxed Four rowing team for reaching Sunday's final with a world best time in today's heat.
The final is currently scheduled for Sunday 1 September at 11:30am - join us in cheering Ed and the rest of the team on then.
Are you following the Paralympics? If you live with a , maybe youâre inspired to get active too.
A healthy lifestyle with exercise to strengthen muscles and joints can help prevent injuries and bleeds â and there are benefits for mental health and wellbeing.
Speak with your care team about exercising in a way that works for you, and check out our Project GYM resources for hints and tips: https://loom.ly/SS_e3jM
If you live with von Willebrand disease, are bruises more of an issue when you're dressing for summer holiday weather?
Our VWD360 study is exploring what itâs really like to live with von Willebrand disease.
If youâre an adult with a confirmed diagnosis and have a good level of written/spoken English, you can help by completing our paid survey. Email Dr Kate Khair for a code to participate: [email protected]
Our lived experience research recognises that everyone with a bleeding disorder has a story to tell
When individual stories are shared, they can help everyone â and weâre always ready to listen. Sharing experience means we can expand knowledge for the benefit of the bleeding disorders community
Want to find out more about our studies? Email [email protected]
Do you live with Factor VII deficiency? Help us learn more about it by sharing your experience in our FVIID360 survey:
https://loom.ly/kOwsR_w
Have the inspired you to get more physically active?
If you live with a bleeding disorder, our Project GYM resources include video hints and tips on starting your fitness journey, advice for personal trainers, and expert tips on strengthening and building muscles.
Exercise and sports can be beneficial for everyone â speak with your care team about exercising in a way that works for you
https://loom.ly/SS_e3jM
Are you a woman with von Willebrand disease? Are you affected by heavy periods?
Our VWD360 study is exploring what it's really like to live with and we'd be interested to hear about your experience. To participate in our paid survey, email Dr Kate Khair: [email protected]
Our Cinderella Study paper on the views of with is a Haemophilia journal top 10 article. We also shared our findings in a series of short animations.
Thank you to all the women with bleeding disorders who participated in the study and helped us highlight the issues they face.
Do you live with a bleeding disorder? If youâre interested in taking part in our , get in touch: [email protected]
It's not all about boys | A story of haemophilia The impact of haemophilia on women and girls continues to be underestimated and even unrecognised. The Haemophilia Societyâs Talking Red campaign is working ...
Glanzmann's Thrombasthenia: A Family's Journey and the Respite Found at Barretstown Cian OâSullivan shares the challenges of Glanzmann's Thrombasthenia affecting his children, the societal judgment they face, and the solace they find at Barretstown. Discover their story and the impact of this rare blood disorder.
Inspired by the Olympics? Does VWD hold you back?
Haemnetâs VWD360 study aims to understand more about what itâs really like to live with von Willebrand disease.
If youâre an adult with a confirmed VWD diagnosis and have a good level of written/spoken English, you can help by completing our paid survey. Email Dr Kate Khair for a code to participate: [email protected]
Does your summer holiday checklist include packing up treatment for bleeds? Our latest lived experience study is exploring what it's really like to live with von Willebrand disease.
If youâre an adult with a confirmed VWD diagnosis and have a good level of written/spoken English, you can help by completing our paid survey. Email Dr Kate Khair for a code to participate: [email protected]
Through lived experience research, our Cinderella Study found that many women with a bleeding disorder struggle with diagnosis and feel misunderstood. But they also told us speaking with others like them is a great source of support
Get in touch to find out more about our studies: [email protected]
https://loom.ly/0oUIhe4
Struggles & Support | A mother's haemophilia story | The Cinderella Study Haemnetâs Cinderella Study is investigating the unmet needs of women and girls affected by bleeding disorders. The women participating in the study include m...
As approaches, the next UK government must implement the Inquiry recommendations
In her personal reflection on the publication of the Inquiry report last month, Sally-Anne Wherry highlights some of the questions that remain to be answered for those infected and affected. Read more on the Haemnet blog:
https://bit.ly/45gIlKJ
The publication of the Inquiry brought a sense of validation to those impacted, but as Sally-Anne Wherry explains, grief and worry remain. Read her personal reflections on the report and what happens now on the Haemnet blog:
https://bit.ly/45gIlKJ
Do you live with Factor VII deficiency? Help us understand more about its everyday impact
Share your experience in our FVIID360 survey We want to know what it's really like to live with Factor VII deficiency
Our FVIID360 survey is helping us understand what it's really like to live with Factor VII deficiency. Can you help us learn more?
Share your experience in our FVIID360 survey We want to know what it's really like to live with Factor VII deficiency
If you live with Factor VII deficiency, you can help us understand more about it
Tell us how living with FVII deficiency affects you Share your experience in our FVIID360 survey
Do you live with Factor VII deficiency? Help us understand more
Share your experience in our FVIID360 survey Help us learn what it's really like to live with Factor VII deficiency
Share your experience in our FVIID360 survey We want to know what it's really like to live with Factor VII deficiency
Last month, our very own Director of Research, Dr. Kate Khair, was honoured with the EAHAD Lifetime Achievement Award.
Following her inspiring acceptance presentation, we felt it was high time to feature our usual Haemcast host as a guest!
Luke Pembroke stepped in as the host to delve deep into Kate's remarkable career. From her childhood interest in nursing to the profound moment she first encountered a person with a bleeding disorder, and from her early years at Great Ormond Street Hospital to her journey as a dedicated researcher driven to improve understanding of the lived experiences of those with haemophilia & rare bleeding disorders
Tune in now to hear from an undisputed legend of the bleeding disorders community.
In conversation with Kate Khair: reflecting on a lifetime's achievement in haemophilia and bleeding disorders by Haemcast 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 resear...
"In addressing equity, we need to acknowledge the rares within the rare."
Check out our Director of Community Engagement Luke Pembroke's blog.
Luke discusses the issue of inequity within the bleeding disorders community and shares insights from Haemnet's recent research in ultra-rare bleeding disorders.
In addressing equity, we need to acknowledge the rares within the rare - Haemnet For Rare Disease Day 2024 the theme is âequity.â This is certainly a topic that resonates within the bleeding disorders community, where more and consistent attention needs to be paid to the ârares within the rareâ. Â Â For Rare Disease Day 2024 the theme is âequity.â This is certainly...
It has been quite the year at Haemnet!...
From continuing to undertake in-depth research in haemophilia and rare bleeding disorders, presenting data at conferences, to welcoming new members of the team and launching our own app, it's safe to say we've been busy!
Our work is inspired by the amazing community of people with bleeding disorders, advocates and healthcare professionals in the world of bleeding disorders.
So as we wind down for the holidays, the Haemnet team thanks you all for your support over the past year. We hope you enjoy a restful festive break with your loved ones. Merry Christmas and a Happy New Year...See you in 2024!
Best wishes from everyone at Haemnet
Last month at The Haemophilia Society UK's Big Get Together we were given the opportunity to share something we've been working on this past year...
We are pleased to reveal 'SEEK by Haemnet', a platform dedicated to patient-focused research in haemophilia and rare bleeding disorders.
Through the SEEK by Haemnet app, our aim is to provide a range of research opportunities in an accessible and inclusive way.
Download the beta version today on the App Store and Google Play: https://bit.ly/SEEKbyHaemnet
"Shared decision-making is a catchy piece of language â and it increasingly feels like itâs everywhere when it comes to haemophilia care! So, what is it all about?"
Check out our latest blog, where Rich Gorman discusses the recent paper 'Shared decision-making for gene therapy in haemophilia' published in the Journal of Haemophilia Practice
Shared decision-making and haemophilia gene therapy - Haemnet Shared decision-making is a catchy piece of language â and it increasingly feels like itâs everywhere when it comes to haemophilia care.
đ©žđȘ Join our Zoom Physio Classes!
đ
First session starting on 15th January 2024. Hurry! Few slots remaining.
đïž Tailored exercises for bleeding disorders
đ©ââïž Led by a physiotherapist
đ Find out more and register at https://haemophilia.scot/join-the-movement/
Stay active and empowered together! đ
"Keep saying their names. Keep remembering."
To commemorate 2023, Kate Khair spoke with The Haemophilia Society UK's LGBT Ambassador and community advocate Mark Ward, Haemosexual
Mark generously shares his experience of growing up with haemophilia without treatment and then after receiving contaminated blood products, as well as reflecting on his hopes for the future of the bleeding disorders and HIV & AIDS community.
Tune in now!
"Keep speaking their names. Keep remembering them." - Commemorating World AIDS Day 2023 ft. Mark Ward, LGBT Ambassador,The Haemophilia Society UK by Haemcast 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 g...
Contribute to Factor 7 Deficiency research today!
Take part in the FVIID 360 survey if you or someone you care for has this ultra-rare bleeding disorder: https://haemnet.typeform.com/FVIID360
Gene therapy for haemophilia B in the UK? Hold your horses!
Last month NICE published its draft guidance in response to CSL Behringâs application to commission Hemgenix in the UK through the NHS. This news was met with a level of disappointment within the community â and it certainly got the Haemnet team talking!
Check out our latest blog to read our thoughts on this decision, what it means for people with haemophilia in the UK, and whether NICEâs final guidance will overturn it.
Gene therapy for haemophilia B in the UK? Hold your horses! - Haemnet After years on the track, gene therapy for haemophilia seems to have the home straights firmly in sight. NICE may still decide otherwise.
Did you know itâs Peer Review Week?
This yearâs theme is âPeer Review and the Future of Publishingâ. Among the questions being asked is whether peer review in its traditional form has a future. Long seen as the bedrock of scholarly publishing, could it be more inclusive, more efficient, more transparent?
Peer review plays a huge role in The Journal of Haemophilia Practice, and alternative models of review will be something to consider for our future. Beyond the models, though, we value the individuals who generously share their time and expertise to review manuscripts for us.
So, to mark Peer Review Week 2023, weâd like to say a big thank you to all of our peer reviewers â we canât imagine a future without you!
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