An open-access journal for sharing experience in the care of people with bleeding disorders. Enquiries: [email protected]
Joined January 2014
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Journal of Haemophilia Practice retweeted
Help us learn more about living with Factor VII deficiency
#FVIID #FactorVII #bleedingdisorders #livedexperience
haemnet.clicksocialimage.top…
Journal of Haemophilia Practice retweeted
On International #NursesDay we celebrate the work of haemophilia nurses around the world and their dedication to caring for people with #bleedingdisorders. 12 specialist nurses reflect on the nurse-patient relationship in @haemjournal's Nurse Focus series: bit.ly/3y9ldRK
Journal of Haemophilia Practice retweeted
Kate, Simon, Mike and Matt are attending and presenting Haemnet research at WFH 2024 this week. We look forward to seeing you there — please come and say hello!
If you’d like to meet or just want to get in touch, contact us: bit.ly/3vV8Ms9
Journal of Haemophilia Practice retweeted
Paper published today based on an advisory board meeting which included 6 people with haemophilia who had participated in Gene Therapy clinical Trials and 5 who had not but were eligible. Open access in Journal of Haemophilia Practice bit.ly/447VFAH @wfhemophilia
Journal of Haemophilia Practice retweeted
Haemnet’s Cinderella Study heard from hundreds of women in the UK living with von Willebrand disease, haemophilia and other rare bleeding disorders. Understanding their experience helped us identify unmet need and pinpoint gaps in care.
Contact us here: bit.ly/3vV8Ms9
Journal of Haemophilia Practice retweeted
The Haemnet team are specialists in people-focused research and communication that furthers understanding of bleeding disorders. We’re all about sharing experience and expanding knowledge to improve treatment and care.
Contact us to find out more: bit.ly/3vV8Ms9
Journal of Haemophilia Practice retweeted
On World Hemophilia Day, @sustainablerich looks at a @haemjournal paper exploring challenges to accessing treatment for acute bleeding among people with haemophilia in Uganda. Read more on the Haemnet blog: bit.ly/3vWsMuA
#WHD2024 #WorldHemophiliaDay #LightItUpRed
Who doesn't love a haemophilia haiku! Happy World Haemophilia Day! #WHD2024 #LightItUpRed
3 haemophilia themed Haiku for #WorldHaemophiliaDay & #internationalhaikupoetryday
Haemophilia
Genes reordered VIII and FIX
Weaknesses a strength
Carrier's symptoms
Coequal with sufferers
Quiet no longer
Missing VIII and FIX
Gene Therapy's answer "cures"
Yet still far to go
Journal of Haemophilia Practice retweeted
Our lived experience research recognises all bleeding disorders, showing unmet need in FVII deficiency, Glanzmann’s thrombasthenia & haemophilia. Von Willebrand disease is next in our sights.
Contact us here: bit.ly/49JuoFz
#WorldHaemophiliaDay #WHD2024 #LightItUpRed
This week sees the publication of two new papers focused on aspects of haemophilia treatment and patient care in The Journal of Haemophilia Practice
bit.ly/4cUoMv2
In the first, multidisciplinary HCPs at the 2023 CATCH Meeting discuss #haemophilia treatment challenges in the UK & Ireland, including care for women & girls, changing paradigms to consider disease impact, bone health, and shared decision-making: bit.ly/43TEVNi
The second explores how patients and clinicians view benefit, risk and shared decision-making in relation to emerging therapies for #haemophilia, including #genetherapy: bit.ly/43W0KeY
A specialist nurse for over 20 years reflects on her experience of finding ways to deliver effective care for a young girl with a very rare clotting disorder.
Read the full article in the Journal of Haemophilia Practice. #RareDiseaseDay2024
sciendo.com/article/10.2478/…
Journal of Haemophilia Practice retweeted
Did you know it’s von Willebrand Disease Awareness Day? VWD is the most common bleeding disorder, affecting ca. 1% of the population.
Our VWD360 study is exploring its impact on individuals and families.
Access our survey here: bit.ly/42jpzAZ
#VWDunited #beVWDaware
Journal of Haemophilia Practice retweeted
The nurse-patient relationship plays a crucial role in #bleedingdisorders care. On the Haemnet blog, @sustainablerich looks at a special @haemjournal series on how that relationship shapes the practice of specialist #haemophilia nurses: bit.ly/48NAo0C
Journal of Haemophilia Practice retweeted
“It’s not just the right time time, it’s about time” – read more about @nbd_foundation’s Pathway to Cures and their bold ambition for a world without inheritable #bleedingdisorders on the Haemnet blog: bit.ly/3O2QM54
Journal of Haemophilia Practice retweeted
Last month at @HaemoSocUK's Big Get Together we had the opportunity to share something exciting we've been working on this year...
We are pleased to reveal SEEK by Haemnet, a platform for those affected by bleeding disorders to contribute to research
bit.ly/SEEKbyHaemnet
Journal of Haemophilia Practice retweeted
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: haemnet.typeform.com/FVIID36…
Journal of Haemophilia Practice retweeted
“Within the #haemophilia community we need more open conversations about the impact of the condition on women and girls” – @sustainablerich discusses a recent @haemjournal paper on how Japanese parents talk to daughters about carrying the haemophilia gene
bit.ly/4a1yr1E
Journal of Haemophilia Practice retweeted
Exploring the experience of #pain in #haemophilia...
Check out our latest blog to read key findings from our Perceptions of Pain in Haemophilia Study
bit.ly/47aqchU
