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haemnet.bsky.social
Haemnet
@haemnet.bsky.social
170 followers 180 following 78 posts
Haemnet works at the heart of the bleeding disorders community.
We're a specialist consultancy, engaged in research, communications, community education and support.

#HemeSky #MedSky #BloodSky
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haemnet.bsky.social
Intergenerational impacts of the #ContaminatedBloodScandal, stakeholder roles in #patientorganisations in India, acquired haemophilia A, and #haemophilia clinical practice are the focus of the latest papers published in JHP. Find out more: https://loom.ly/mXzYdu4

#HemeSky #BloodSky #MedSky
November 3, 2025 at 8:01 AM
haemnet.bsky.social
Wishing our friends, followers, colleagues and clients a spooktacular Halloween 👻🎃🕷️
October 31, 2025 at 7:01 AM
haemnet.bsky.social
Trust in Healthcare & Disrupted Life Paths are major themes in a paper on how the #ContaminatedBlood Scandal has impacted adult children and siblings of people with #haemophilia who were affected. Open access, in The Journal of Haemophilia Practice: https://loom.ly/keKXHlU
#HemeSky #BloodSky #MedSky
October 27, 2025 at 6:53 AM
haemnet.bsky.social
What links banana sap, mangos and #haemophilia? Join us for the latest episode of #Haemcast, with Morris Okello and Dr Kate Khair, to find out more. Available here: https://loom.ly/p27kavc, or on your favourite #podcast platform.

#Uganda #livedexperience
#HemeSky #BloodSky #MedSky
October 20, 2025 at 6:27 AM
haemnet.bsky.social
New in The Journal of Haemophilia Practice: a real-world study in the UAE shows improved clinical outcomes with #emicizumab #prophylaxis in children and adults with severe #haemophilia A. https://doi.org/10.2478/jhp-2025-0013

#HemeSky #MedSky #BloodSky
October 14, 2025 at 6:33 AM
haemnet.bsky.social
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

October 10, 2025 at 5:23 AM
haemnet.bsky.social
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
October 7, 2025 at 5:39 AM
haemnet.bsky.social
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
September 30, 2025 at 5:31 AM
haemnet.bsky.social
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
September 25, 2025 at 5:00 AM
haemnet.bsky.social
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
September 22, 2025 at 5:00 AM
haemnet.bsky.social
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
September 17, 2025 at 5:53 AM
haemnet.bsky.social
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
September 10, 2025 at 6:35 AM
haemnet.bsky.social
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
September 4, 2025 at 10:41 AM
haemnet.bsky.social
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
August 27, 2025 at 8:27 AM
haemnet.bsky.social
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
August 21, 2025 at 12:25 PM
haemnet.bsky.social
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
August 11, 2025 at 6:38 AM
haemnet.bsky.social

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
August 4, 2025 at 6:30 AM
haemnet.bsky.social
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
July 29, 2025 at 7:01 AM
haemnet.bsky.social
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
July 23, 2025 at 5:48 AM
haemnet.bsky.social
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
July 14, 2025 at 8:27 AM
haemnet.bsky.social
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
July 10, 2025 at 9:55 AM
haemnet.bsky.social
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
July 7, 2025 at 9:19 AM
Reposted by Haemnet
haemnet.bsky.social
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
March 13, 2025 at 9:48 AM
haemnet.bsky.social
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
June 30, 2025 at 10:16 AM
haemnet.bsky.social
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
June 23, 2025 at 6:54 AM