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haemnet.bsky.social
Haemnet
@haemnet.bsky.social
170 followers 180 following 79 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
Being heard and understood? Getting advice and support? Meeting people like you? If you live with a bleeding disorder, what does community mean to you?

#bleedingdisorders #community #livedexperience #research #haemophilia #vonWillebrandDisease #GlanzmannThrombasthenia

#HemeSky #BloodSky
November 13, 2025 at 6:57 AM
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