#WorldPTDay we highlight the importance of physiotherapy for those living with a #bleedingdisorder #haemophilia Specialized, personalised and supported care from childhood through to later in life, promoting and enabling participation and physical activity for all.
September 8, 2025 at 10:13 AM
#WorldPTDay we highlight the importance of physiotherapy for those living with a #bleedingdisorder #haemophilia Specialized, personalised and supported care from childhood through to later in life, promoting and enabling participation and physical activity for all.
Shouting into the bluesky void to see who else has #hemophilia or #vonwillebrandsdisease or another #bleedingdisorder hi! I have type 3 vWD! I self inject blood products and deal with the usual joint bleeds and soft tissue bleeds. Reach out if you wanna be pals :)
October 21, 2024 at 6:25 PM
Shouting into the bluesky void to see who else has #hemophilia or #vonwillebrandsdisease or another #bleedingdisorder hi! I have type 3 vWD! I self inject blood products and deal with the usual joint bleeds and soft tissue bleeds. Reach out if you wanna be pals :)
On #InternationalWomensDay 2026, we want to give visibility and a voice to women and girls affected by a #BleedingDisorder. Read our #IWD blog here: https://loom.ly/lujMOIw
#GiveToGain #March8 #BleedingDisorders #GenderEquality #ParityOfCare #HemeSky #MedSky
#GiveToGain #March8 #BleedingDisorders #GenderEquality #ParityOfCare #HemeSky #MedSky
March 8, 2026 at 9:01 AM
On #InternationalWomensDay 2026, we want to give visibility and a voice to women and girls affected by a #BleedingDisorder. Read our #IWD blog here: https://loom.ly/lujMOIw
#GiveToGain #March8 #BleedingDisorders #GenderEquality #ParityOfCare #HemeSky #MedSky
#GiveToGain #March8 #BleedingDisorders #GenderEquality #ParityOfCare #HemeSky #MedSky
"Without it, #newborns face a serious risk of #VitaminK deficiency #bleeding ..a rare but potentially fatal #BleedingDisorder that can strike in the first 6 months of life. A single injection at #birth eliminates nearly all of that risk.": buff.ly/9s0tZBt
via YaleMedicine
#pregnancy #pediatrics
via YaleMedicine
#pregnancy #pediatrics
Why Do Newborns Need the Vitamin K Shot?
A Yale Medicine pediatric expert explains how a simple shot at birth prevents dangerous—and potentially fatal—bleeding.
buff.ly
July 15, 2026 at 8:30 PM
"Without it, #newborns face a serious risk of #VitaminK deficiency #bleeding ..a rare but potentially fatal #BleedingDisorder that can strike in the first 6 months of life. A single injection at #birth eliminates nearly all of that risk.": buff.ly/9s0tZBt
via YaleMedicine
#pregnancy #pediatrics
via YaleMedicine
#pregnancy #pediatrics
🎥 Missed our #WorldPhysiotherapyDay 2026 #ThisWay webinar? Watch it now! 💪 "Ergonomics & Physiotherapy: Small Adjustments, Big Benefits" with physiotherapist Andrea Wittenbecher — practical tips for staying active with a #BleedingDisorder👇️ buff.ly/SxW2KQ7
Ergonomics and Physiotherapy: Small Adjustments, Big Benefits - Andrea Wittenbecher - #ThisWay
The EHC #ThisWay campaign aims to promote the importance of physical and mental health for people with bleeding disorders. This video is the third in our 2026 webinar series. In this session, held on…
buff.ly
September 25, 2026 at 10:00 AM
🎥 Missed our #WorldPhysiotherapyDay 2026 #ThisWay webinar? Watch it now! 💪 "Ergonomics & Physiotherapy: Small Adjustments, Big Benefits" with physiotherapist Andrea Wittenbecher — practical tips for staying active with a #BleedingDisorder👇️ buff.ly/SxW2KQ7
📢 Living with an #ExtremelyRare #BleedingDisorder means complex treatment routines, specialised medication storage, navigating insurance systems & managing education & work life. Patient voices are essential to improving care. #EHCRoundTable
March 17, 2026 at 2:04 PM
📢 Living with an #ExtremelyRare #BleedingDisorder means complex treatment routines, specialised medication storage, navigating insurance systems & managing education & work life. Patient voices are essential to improving care. #EHCRoundTable
If you live with a #BleedingDisorder like #Haemophilia, #VWD, etc., then trying to have a “normal” job, education, relationship, or life in general is an up hill struggle every day of your life.
February 3, 2025 at 12:26 PM
If you live with a #BleedingDisorder like #Haemophilia, #VWD, etc., then trying to have a “normal” job, education, relationship, or life in general is an up hill struggle every day of your life.
The first in our blog series about parents of children with a #BleedingDisorder tells the story of Anna, whose daughter was diagnosed with Type 3 #vonWillebrandDisease at six months old. With thanks to Anna (pseudonym) for sharing her experience. Read it here: loom.ly/3esEGP8
#HemeSky #MedSky
#HemeSky #MedSky
December 12, 2024 at 7:24 AM
The first in our blog series about parents of children with a #BleedingDisorder tells the story of Anna, whose daughter was diagnosed with Type 3 #vonWillebrandDisease at six months old. With thanks to Anna (pseudonym) for sharing her experience. Read it here: loom.ly/3esEGP8
#HemeSky #MedSky
#HemeSky #MedSky
Bleeding disorders are commonly diagnosed in patients presenting with heavy menses at menarche. Check out this month's PAGWebEd Case to review the appropriate work up in the adolescent presenting with heavy menstrual bleeding. #naspag #residenteducation #heavymenses #bleedingdisorder
January 12, 2026 at 10:20 PM
Bleeding disorders are commonly diagnosed in patients presenting with heavy menses at menarche. Check out this month's PAGWebEd Case to review the appropriate work up in the adolescent presenting with heavy menstrual bleeding. #naspag #residenteducation #heavymenses #bleedingdisorder
New on #Haemcast: members of #LFWBD discuss talking to their children about their #bleedingdisorder — and how their concerns aren't always what you might expect.
On podcast platforms, YouTube & here:
https://loom.ly/uvvmvQk
#haemophilia #families #children #podcast
#HemeSky #MedSky
On podcast platforms, YouTube & here:
https://loom.ly/uvvmvQk
#haemophilia #families #children #podcast
#HemeSky #MedSky
April 8, 2026 at 6:15 AM
New on #Haemcast: members of #LFWBD discuss talking to their children about their #bleedingdisorder — and how their concerns aren't always what you might expect.
On podcast platforms, YouTube & here:
https://loom.ly/uvvmvQk
#haemophilia #families #children #podcast
#HemeSky #MedSky
On podcast platforms, YouTube & here:
https://loom.ly/uvvmvQk
#haemophilia #families #children #podcast
#HemeSky #MedSky
What’s the worst thing about living with a #BleedingDisorder? I don’t think there is one thing above all else, but:
1. #SurvivorGuilt
2. #Depression
3. The long, debilitating march of #Arthritis and #PainManagement
Are all right up there…
1. #SurvivorGuilt
2. #Depression
3. The long, debilitating march of #Arthritis and #PainManagement
Are all right up there…
February 25, 2025 at 1:17 PM
What’s the worst thing about living with a #BleedingDisorder? I don’t think there is one thing above all else, but:
1. #SurvivorGuilt
2. #Depression
3. The long, debilitating march of #Arthritis and #PainManagement
Are all right up there…
1. #SurvivorGuilt
2. #Depression
3. The long, debilitating march of #Arthritis and #PainManagement
Are all right up there…
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
#HaemSky #MedSky #BloodSky
August 21, 2025 at 12:25 PM
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
#HaemSky #MedSky #BloodSky
Interested to hear about family life with a #bleedingdisorder? 3 episodes of our family-focused #Haemcast series with #LFWBD are now available — and the next is coming soon! Search on your on #podcast platforms or link here https://loom.ly/A4UWu6M
#families #HemeSky #FMSky @medsky.social
#families #HemeSky #FMSky @medsky.social
May 22, 2026 at 5:38 AM
Interested to hear about family life with a #bleedingdisorder? 3 episodes of our family-focused #Haemcast series with #LFWBD are now available — and the next is coming soon! Search on your on #podcast platforms or link here https://loom.ly/A4UWu6M
#families #HemeSky #FMSky @medsky.social
#families #HemeSky #FMSky @medsky.social
#haemophilia #carriers remain an underserved group
Our recommendations are for #BleedingDisorder #nurses to be efficient in the skills of family pedigree drawing & taking a bleeding history; we are running 'ask the expert' sessions at #WFHCongress2026
Join us
onlinelibrary.wiley.com/doi/10.1111/...
Our recommendations are for #BleedingDisorder #nurses to be efficient in the skills of family pedigree drawing & taking a bleeding history; we are running 'ask the expert' sessions at #WFHCongress2026
Join us
onlinelibrary.wiley.com/doi/10.1111/...
Evaluation of Access to Care for Women Carriers of Haemophilia in Haemophilia Treatment Centres: A Multinational Experience
Introduction Haemophilia has historically been recognised as a disease occurring in males due to X-linked inheritance. Some haemophilia carriers (HC) with factor eight or nine levels within normal r...
onlinelibrary.wiley.com
April 17, 2026 at 7:49 AM
#haemophilia #carriers remain an underserved group
Our recommendations are for #BleedingDisorder #nurses to be efficient in the skills of family pedigree drawing & taking a bleeding history; we are running 'ask the expert' sessions at #WFHCongress2026
Join us
onlinelibrary.wiley.com/doi/10.1111/...
Our recommendations are for #BleedingDisorder #nurses to be efficient in the skills of family pedigree drawing & taking a bleeding history; we are running 'ask the expert' sessions at #WFHCongress2026
Join us
onlinelibrary.wiley.com/doi/10.1111/...
🩸 Extremely Rare #BleedingDisorder of the Month: #FXIDeficiency 🔎 Low FXI levels mean bleeding can become prolonged after surgery, dental work, injury & childbirth. ⚠️ Severity varies widely & doesn't always match FXI levels. 🔗 buff.ly/9j5AAmo
September 18, 2026 at 7:00 AM
🩸 Extremely Rare #BleedingDisorder of the Month: #FXIDeficiency 🔎 Low FXI levels mean bleeding can become prolonged after surgery, dental work, injury & childbirth. ⚠️ Severity varies widely & doesn't always match FXI levels. 🔗 buff.ly/9j5AAmo
Does your child have a #bleedingdisorder? Haemnet has new #research studies starting soon and we’re particularly interested in hearing from people with #haemophiliaB and their carers, living in the UK. Get in touch to find out more : https://loom.ly/vkd8zoE
#HemeSky #MedSky
#HemeSky #MedSky
September 8, 2026 at 8:01 AM
Does your child have a #bleedingdisorder? Haemnet has new #research studies starting soon and we’re particularly interested in hearing from people with #haemophiliaB and their carers, living in the UK. Get in touch to find out more : https://loom.ly/vkd8zoE
#HemeSky #MedSky
#HemeSky #MedSky
📣 Join our next #ThisWay webinar on #Ergonomics & #Physiotherapy on #WorldPTDay 🗓️ 8 Sept 2026, 18:00–19:00 CEST 💻 Online 💪 Practical strategies for staying active with a #BleedingDisorder + live Q&A 👉 Register: buff.ly/pZRdNQG
September 7, 2026 at 1:00 PM
📣 Join our next #ThisWay webinar on #Ergonomics & #Physiotherapy on #WorldPTDay 🗓️ 8 Sept 2026, 18:00–19:00 CEST 💻 Online 💪 Practical strategies for staying active with a #BleedingDisorder + live Q&A 👉 Register: buff.ly/pZRdNQG
🎙️New Peer Pioneers episode out now! EHC host Daria Camilli sits down with patient advocate Marko Marinić & art therapist Shagi Galili to explore what #LivingWellAgeingWell with a #BleedingDisorder actually feels like beyond the physical.
August 28, 2026 at 7:30 AM
🎙️New Peer Pioneers episode out now! EHC host Daria Camilli sits down with patient advocate Marko Marinić & art therapist Shagi Galili to explore what #LivingWellAgeingWell with a #BleedingDisorder actually feels like beyond the physical.
Do you have a #bleedingdisorder? Have you considered taking part in #research? We have new studies starting soon and are particularly interested in hearing from people with #haemophiliaB living in the UK.
Get in touch to find out more: https://loom.ly/vkd8zoE
#HaemSky #MedSky
Get in touch to find out more: https://loom.ly/vkd8zoE
#HaemSky #MedSky
August 26, 2026 at 8:01 AM
Do you have a #bleedingdisorder? Have you considered taking part in #research? We have new studies starting soon and are particularly interested in hearing from people with #haemophiliaB living in the UK.
Get in touch to find out more: https://loom.ly/vkd8zoE
#HaemSky #MedSky
Get in touch to find out more: https://loom.ly/vkd8zoE
#HaemSky #MedSky
In the Aug 26 NBDF Wednesday Webinar we will learn all about the #UltraRare #BleedingDisorder hereditary #FactorX deficiency from Dr Meera Chitlur!
Sponsored by Kedrion.
Bring your questions for the live Q&A!
Pre-register (FREE): bleeding.org/events
Sponsored by Kedrion.
Bring your questions for the live Q&A!
Pre-register (FREE): bleeding.org/events
Upcoming Events for the Bleeding Disorders Community | NBDF
Discover in-person and virtual events to connect with the bleeding disorders community. Stay informed about upcoming gatherings, workshops, and conferences.
bleeding.org
August 21, 2026 at 2:52 PM
In the Aug 26 NBDF Wednesday Webinar we will learn all about the #UltraRare #BleedingDisorder hereditary #FactorX deficiency from Dr Meera Chitlur!
Sponsored by Kedrion.
Bring your questions for the live Q&A!
Pre-register (FREE): bleeding.org/events
Sponsored by Kedrion.
Bring your questions for the live Q&A!
Pre-register (FREE): bleeding.org/events
🩸 Extremely Rare #BleedingDisorder of the Month: #FactorVIIDeficiency 🔎 Low FVII levels mean clotting struggles even to get started, causing nosebleeds, prolonged bleeding, heavy periods & more. Often missed since severity varies widely. 🔗 buff.ly/T43Pp0e
August 14, 2026 at 7:00 AM
🩸 Extremely Rare #BleedingDisorder of the Month: #FactorVIIDeficiency 🔎 Low FVII levels mean clotting struggles even to get started, causing nosebleeds, prolonged bleeding, heavy periods & more. Often missed since severity varies widely. 🔗 buff.ly/T43Pp0e
📌 Discover #LivingWellAgeingWell, the EHC project on #Ageing with a #BleedingDisorder, running from 2025 to 2026! As people with bleeding disorders live longer than ever, this project has built a whole hub of resources to help. 🧵 👇️
July 31, 2026 at 7:30 AM
📌 Discover #LivingWellAgeingWell, the EHC project on #Ageing with a #BleedingDisorder, running from 2025 to 2026! As people with bleeding disorders live longer than ever, this project has built a whole hub of resources to help. 🧵 👇️
What's it like, living with #GlanzmannThrombasthenia?
It's an #ultrarare #BleedingDisorder most of us don't know much about. In the July 8 NBDF Wednesday Webinar we will learn more directly from lived experience, medical, and research experts!
Pre-register (FREE) bleeding.org/events
2PM ET
Live Q&A
It's an #ultrarare #BleedingDisorder most of us don't know much about. In the July 8 NBDF Wednesday Webinar we will learn more directly from lived experience, medical, and research experts!
Pre-register (FREE) bleeding.org/events
2PM ET
Live Q&A
Upcoming Events for the Bleeding Disorders Community | NBDF
Discover in-person and virtual events to connect with the bleeding disorders community. Stay informed about upcoming gatherings, workshops, and conferences.
bleeding.org
July 6, 2026 at 10:42 AM
What's it like, living with #GlanzmannThrombasthenia?
It's an #ultrarare #BleedingDisorder most of us don't know much about. In the July 8 NBDF Wednesday Webinar we will learn more directly from lived experience, medical, and research experts!
Pre-register (FREE) bleeding.org/events
2PM ET
Live Q&A
It's an #ultrarare #BleedingDisorder most of us don't know much about. In the July 8 NBDF Wednesday Webinar we will learn more directly from lived experience, medical, and research experts!
Pre-register (FREE) bleeding.org/events
2PM ET
Live Q&A
On World Hemophilia Day, I remember my dad - my inspiration and legacy for the advocacy I do for the #bleedingdisorder and #raredisease communities.
I also honor all the women and girls, like myself, who live with bleeding disorders. 🩸
#advocacy #education #familylegacy
I also honor all the women and girls, like myself, who live with bleeding disorders. 🩸
#advocacy #education #familylegacy
April 17, 2025 at 3:12 PM
On World Hemophilia Day, I remember my dad - my inspiration and legacy for the advocacy I do for the #bleedingdisorder and #raredisease communities.
I also honor all the women and girls, like myself, who live with bleeding disorders. 🩸
#advocacy #education #familylegacy
I also honor all the women and girls, like myself, who live with bleeding disorders. 🩸
#advocacy #education #familylegacy