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Haemnet @haemnet.bsky.social · 2d

October 10th is Hereditary #FactorX Deficiency Awareness Day. This #UltraRare #BleedingDiisorder affects ca. 1 in a million worldwide. Check out the commentary on two FXD case studies in The Journal of Haemophilia Practice: https://doi.org/10.2478/jhp-2023-0019

#HemeSky #MedSky #BloodSky

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Haemnet @haemnet.bsky.social · 5d

How do you make life as 'normal' as possible for a child with a bleeding disorder? On our #blog, Debbie discusses encouraging her son to 'own' his #haemophilia, school trips, holidays, and student doctor exams. Read it here: https://loom.ly/mSM9vzo

#HemeSky #BloodSky #MedSky

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Haemnet @haemnet.bsky.social · 12d

New in The Journal of Haemophilia Practice: a case series on the use of extended half-life Factor IX in the surgical setting. Read it, open access, here: https://doi.org/10.2478/jhp-2025-0012

#haemophiliaB #prophylaxis #surgery
#HemeSky #MedSky #BloodSky

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Haemnet @haemnet.bsky.social · 17d

We're shining a (purple) light on #ImmuneThrombocytopenia for Global #ITP Awareness Week. Our blog takes a closer look at ITP & its impact on women. Find out more here: https://loom.ly/CVEQD6g

#ImmuneThrombocytopenia #ITPAwareness #Global4ITP #PaintThePlanetPurple
#HemeSky #BloodSky #MedSky

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Haemnet @haemnet.bsky.social · 20d

It's Global ITP Awareness Week!

Immune thrombocytopenia — #ITP — affects around 9.5 adults in 100,000 at any one time, but can occur at any age. Characterised by a low #platelet count, it can result in easy bruising and #bleeding.

#ITPaware #global4itp #HemeSky #MedSky #BloodSKy

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Haemnet @haemnet.bsky.social · 25d

New in The Journal of Haemophilia Practice: results from a #qualitative study exploring the experiences of people with severe #haemophilia A in the #HemiNorth cohort switching from factor VIII prophylaxis to #emicizumab. Open access, here: https://loom.ly/MvtKKe4

#HemeSky #MedSky #BloodSky

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Haemnet @haemnet.bsky.social · Sep 10

With no family history of #haemophilia, Debbie was shocked when her son, Jamie, was diagnosed with severe haemophilia. She saw being able to treat him as a way of taking back control. Read her story in our #parent-focused blog: https://loom.ly/c4ZQfgQ

#HemeSky #BloodSky #MedSky

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Haemnet @haemnet.bsky.social · Sep 4

In @eahad.bsky.social's latest podcast,
@majfbirkedal.bsky.social discusses using a subcutaneous drug delivery device to reduce treatment-related #pain in children with #haemophiliaA on #emicizumab. Read her paper in The Journal of Haemophilia Practice sciendo.com/article/10.2...

#HemeSky #MedSky

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Haemnet @haemnet.bsky.social · Aug 27

New in The Journal of Haemophilia Practice: a case series report from the Netherlands on the complexity of managing acquired haemophilia A, highlighting the role of #emicizumab: https://doi.org/10.2478/jhp-2025-0008

#AcquiredHaemophilia #CaseSeries #HemeSky #MedSky #BloodSky

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Haemnet @haemnet.bsky.social · Aug 21

As a dance teacher, Helen is fit and physically active – but living with the rare #bleedingdisorder Factor V deficiency means life isn’t always straightforward. Tune in to the latest episode of #Haemcast to hear her story: https://loom.ly/LfHjSqs

#HaemSky #MedSky #BloodSky

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Haemnet @haemnet.bsky.social · Aug 11

The new episode of #Haemcast is out now. After 'Reflections on a life with severe #haemophilia', @katekhair.bsky.social reflects on changes in care during Terence's lifetime. Listen on your favourite #podcast platform. https://loom.ly/YLKAJ6s
#HemeSky #BloodSky

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Haemnet @haemnet.bsky.social · Aug 4

2025 is looking truly international for The #Journal of #Haemophilia Practice. Among others, we're proud to publish papers from India, South Africa and Tanzania, where efforts to improve diagnosis and treatment are reaping rewards. More info here: https://loom.ly/NiFOf3g

#HemeSky #BloodSky #MedSky

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Haemnet @haemnet.bsky.social · Jul 29

Ready for the next #Haemcast? Coming this Thursday, @katekhair.bsky.social looks back on Terence O'Rourke's reflections on life with severe haemophilia and how #haemophilia care has and hasn't changed. https://loom.ly/A4UWu6M
#HemeSky #BloodSky #MedSky #podcast

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Haemnet @haemnet.bsky.social · Jul 23

Tuned into #Haemcast recently? Don't forget you can now access all episodes in our mini series 'Reflections on a life with severe #haemophilia', featuring octagenarian Terence O'Rourke: https://loom.ly/A4UWu6M
#bleedingdisorders #podcast #HemeSky #MedSky #BloodSky

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Haemnet @haemnet.bsky.social · Jul 14

New on the Haemnet blog, community advocate Rich Gorman comments on a report from a multidisciplinary expert discussion exploring virtual care in haemophilia, published in The Journal of Haemophilia Practice: loom.ly/k_d1RDk

#haemophilia #telehealth #haemjournal #blog #HemeSky #MedSky

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Haemnet @haemnet.bsky.social · Jul 10

Part 6 of our #Haemcast series in conversation with Terence O'Rourke about living with #haemophilia A comes right up to date with talk of #genetherapy, #self-advocacy and #treatment decisions. Stream, download and listen here: loom.ly/A4UWu6M

#podcast @HemeSky @BloodSky

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Haemnet @haemnet.bsky.social · Jul 7

Seaside staycation or going global? Peak summer holiday time is coming, but we're looking forward to a busy schedule of projects and planning. What are your summer plans?

#GlanzmannThrombasthenia #haemophilia #vonWillebrandDisease #FactorDeficiencies #Haemcast #bleedingdisorders #research
@HemeSky

Reposted by Haemnet

Haemnet @haemnet.bsky.social · Mar 13

Women affected by #haemophilia often experience delayed diagnosis. This means not having access to the treatment & care they need, impacting quality of life and putting them at risk of serious bleeding. Time to bust the myth that #women don't have haemophilia. #womenbleedtoo

#HemeSky #BloodSky

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Haemnet @haemnet.bsky.social · Jun 30

Jo & Alex's message to #families who have children with #vonWillebrandDisease: "It isn't something to be frightened of. It's something you need to learn and understand and be prepared for." Part 2 of their story is on the #Haemnet blog now: loom.ly/tfNPF4Y

#VWD #HemeSky #BloodSky

Raising girls with Type 2A von Willebrand disease (part 2) - Haemnet

Alex and Jo discuss raising girls with Type 2A von Willebrand's, with positive messages for other families affected by von Willebrand disease

loom.ly

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Haemnet @haemnet.bsky.social · Jun 23

Attending #ISTH2025? One of our two VWD360 posters reports on bleed diaries completed by more than 50 adults with von Willebrand disease over 30 days. The results challenge assumptions about bleed frequency in less severe types

#livedexperience #research #Haemnet
#HemeSky #MedSky #BloodSky

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Haemnet @haemnet.bsky.social · Jun 20

If you're going to #ISTH2025, check out our poster reporting final results from VWD360, a natural history study with over 600 participants, exploring the real-life experience of adults living with #vonWillebrandDisease

#livedexperience #research #Haemnet
#HemeSky #MedSky #BloodSky

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Haemnet @haemnet.bsky.social · Jun 19

Are you going to #ISTH2025? Look out for our posters presenting results and insights from the #Haemnet VWD360 study, which explored the daily impact of #vonWillebrandDisease with over 600 participants

#ISTH #bleedingdisorders #research #livedexperience
#HemeSky #MedSky #BloodSky

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Haemnet @haemnet.bsky.social · Jun 16

Part 5 of Terence O'Rourke's reflections on eight decades of living with severe #haemophilia A is now available on #Haemcast. Turn on sound to hear why Haemnet's Dr Kate Khair thinks stories like Terence's are important. Stream, download, listen! loom.ly/hT_gfBI

#HemeSky @katekhair.bsky.social

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Haemnet @haemnet.bsky.social · Jun 9

Jo & Alex have 3 children with Type 2A #vonWillebrandDisease and a family life that's "very much a roller coaster of extremes". Find out about their story in the next part of our blog series focusing on the #parents of children with #bleedingdisorders: loom.ly/GYS0HnU

#HemeSky #BloodSky

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Haemnet @haemnet.bsky.social · Jun 2

Research published in The Journal of Haemophilia Practice by and for #haemophilia #nurses is among its top cited & most downloaded articles.

Check out our blog on nurses & #research here: loom.ly/O4ZRhmQ.

Or explore the journal here: loom.ly/dv66u1o

#HemeSky #MedSky #bleedingdisorders

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