Did you know the most common genetic variant associated with Type 1 VWD is p.Tyr1584Cys. Identified 20 years ago, yet its pathogenic mechanism is still unknown! In this #researchletter, Omid Seidizadeh + flora peyvandi sort it out. 🔬 Read it here: rpthjournal.org/article/S2475-…

We are delighted to announce that BGS has received further funding from NHS England therefore our #Frailty elearning course will remain FREE to health and social care professionals until 30 June 2026. bgs.org.uk/2023F-IF

Our Cinderella Study found unmet need among #women with #bleedingdisorders. Many struggle with diagnosis after the birth of a child. They told us #community & speaking with women like them is important For more on our studies: [email protected] loom.ly/FJzyp58

Please back our fundraiser for a memorial garden for haemophilia infected blood victims at RHS Chelsea Flower Show 2025, to be then given a permanent home at St Botolph's church: crowdfunder.co.uk/p/chelsea-flow… Tainted Blood

People with #bleedingdisorders can enjoy #sports & #exercise too – just ask Paralympian rower Ed Fuller. Check out our Project GYM resources & speak with your care team to start your fitness journey: loom.ly/SS_e3jM #haemophilia #vonWillebrandDisease [email protected]

Just 7,000 wild cheetah left. Conservationists spend $£mm trying to protect the species & stop the trade in live cubs as exotic 'pets' - then THIS!! Born Free Foundation Born Free Foundation Kenya Born Free USA dominic dyer Nicky Campbell Ricky Gervais It's not conservation, it's killing for fun. RT

#12: Info women need hematologists to know: If women are on prophylaxis, they want to be considered for the same yearly medical screenings that men on prophylaxis receive (and maybe a few more unique to women who bleed)!

If you're a woman with #vonWillebrandDisease, are periods particularly troublesome? We want to know what it’s really like to live with #VWD. If you have a a confirmed diagnosis, you can complete our survey. Email Dr Kate Khair for a code to participate: [email protected]

We’re excited to unveil the new #WorldHemophiliaDay logo! 🎉 This modern and confident design reflects the optimism and important discussions within the #BleedingDisorders community. The logo is now available on our website. Download now: bit.ly/3up6exA

A new case study in The Journal of Haemophilia Practice explores the experience of a #trans person with a #bleedingdisorder as they navigate the healthcare system, highlighting complex care needs and lack of understanding. loom.ly/lujbQms #transgender #healthcare

Looking for anyone aged 16+ any type/severity. The more of you who join up the better our understanding will be #vWD

Do it cos Nanda said!🤣

A useful resource for students Carol Forde-Johnston💙 thanks for sharing

#18: Info women REALLY NEED hematologists to know: Sex can look like a murder scene. There - I said it. A. Murder. Scene. It is really rough. Can we please start talking about prophylaxis to control bleeding during and after intimacy??? WHY ARE WE NOT TALKING ABOUT THIS???

Hearing the personal experience is SO important. Well done to Julia and EHC_Haemophilia for getting the voice of people with #vWD out to the wider community

Was great to see Ed Fuller being such a great role model- we can’t all be Olympians but we all can (and should) move more. Taking the 🐕 for a walk counts too ….. now if I only had a dog!

I had a blast with these nurses from Nigeria. They will find more #haemophilia and that will improve lives

I don’t know who needs to hear this, but if you’re partnering with #pts in research & it comes to conference season, presentations should be done *in partnership.* If you have a #pt or researcher present alone, you’re kinda missing the whole point.

Explore findings from a study out of the U.K. showing the effect of chronic ankle pain on patients with moderate-to-severe hemophilia: bit.ly/3Tnj10H #HemophiliaAwareness #HemophiliaLife #HemophiliaCommunity #HemophiliaAdvocates #LivingWithHemophilia

When rare is almost not rare enough. In his latest blog, Haemnet's Mike Holland discusses Von Willebrand Disease (#vWD) and the ongoing vWD360 study, which seeks to understand what it is like to live with vWD. haemnet.com/blog/von-wille…