Haemnet, Brixton Videos

Are you following the Paralympics? If you live with a #bleedingdisorder, maybe you’re inspired to get active too. A healthy lifestyle with exercise to strengthen muscles and joints can help prevent injuries and bleeds – and there are benefits for mental health and wellbeing. Speak with your care team about exercising in a way that works for you, and check out our Project GYM resources for hints and tips: https://loom.ly/SS_e3jM #Paralympics #haemophilia #vonWillebrandDisease #exercise #fitness

Have the #Olympics inspired you to get more physically active? If you live with a bleeding disorder, our Project GYM resources include video hints and tips on starting your fitness journey, advice for personal trainers, and expert tips on strengthening and building muscles. Exercise and sports can be beneficial for everyone – speak with your care team about exercising in a way that works for you https://loom.ly/SS_e3jM #bleedingdisorders #haemophilia #vonWillebrandDisease #exercise #fitness

Introducing SEEK by Haemnet
Last month at The Haemophilia Society UK's Big Get Together we were given the opportunity to share something we've been working on this past year... We are pleased to reveal 'SEEK by Haemnet', a platform dedicated to patient-focused research in haemophilia and rare bleeding disorders. Through the SEEK by Haemnet app, our aim is to provide a range of research opportunities in an accessible and inclusive way. Download the beta version today on the App Store and Google Play: https://bit.ly/SEEKbyHaemnet

Contribute to Factor 7 Deficiency research today! Take part in the FVIID 360 survey if you or someone you care for has this ultra-rare bleeding disorder: https://haemnet.typeform.com/FVIID360

Do you have Factor 7 Deficiency? We want to hear your experiences. Complete the FVIID360 survey today… link in bio. #factor7 #factor7deficiency #fviideficiency #raredisease #bleedingdisorder #bleedingdisorders

If you or someone you care for has Factor 7 Deficiency, we want to hear your experiences. Take part in the FVIID 360 Study today! https://haemnet.typeform.com/FVIID360

The FVIID 360 Study is live!
We have just launched the Factor VII Deficiency 360 Study! The aim of this study is to gain a greater understanding of Factor VII deficiency and the impact it has on those who live with it and their families. If you or someone you care for are affected by FVIID take part in the survey now! There are 6x £50 Amazon gift-cards to be won 🔗 https://haemnet.typeform.com/FVIID360

Glanzmann's 360 - a natural history study exploring the impact that Glanzmann's Thrombasthenia has on those affected by it.
We're so pleased with the response from the Glanzmann's community to the Glanzmann's 360 natural history study. It has been great to see so many people from such a rare and unrecognised community come forward to share their stories and experience. We are extremely thankful to the Glanzmann's Research Foundation, Inc. for all their support. There is just over a month left to get involved and have your voice heard as part of this study. If you are someone living with or a parent of someone with Glanzmann’s Thrombastenia we'd love to hear from you. You can take part in the 10 minute survey by following this link: https://haemnet.typeform.com/to/WStqe1Wb If you want to know more or have any questions, then send an email to [email protected] Your stories and experiences will provide invaluable insights and help to improve understanding of GT.

Thanks to those who have shared their experiences so far. There's still time to take part in the Glanzmann's 360 Study survey 🔗Just click the linktree in our bio We want to capture as many experiences as possible about this rare #bleedingdisorder, so share the word! . . . . . . #hemophilia #haemophilia #glanzmannsthrombasthenia #glanzmannsthrombastheniaparents #raredisease #rarediseaseresearch #rarediseaseawareness

Haemnet is undertaking a research project to better understand the challenges those living with #glanzmannsthrombasthenia and their families face in every day life. If you or somebody you know would like to share their experiences, click the link in our bio to take part in a short 10 minute questionnaire. You can also email research@haemnet to ask any questions get involved in future studies. #haemophilia #hemophilia #vonwillebranddisease #vonwillebrandsdisease #vonwillebrands #vonwillebrand #bleedingdisorders #raredisease #rarediseaseawareness #rarediseaseresearch

Improving patient health literacy
Tune in to the latest Haemcast episode where our hosts Dr Kate Khair and Luke Pembroke speak with Jonathan Berry from NHS England & Improvement, Personalised Care Group. How do you think we can improve health literacy within the bleeding disorders community? Listen here 🎧 https://bit.ly/3lZGO6Q Haemcast is also available Apple, Google and Spotify📱

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What is PK? | Pharmacokinetics explained
Pharmacokinetics aka PK...but what actually is PK? Pharmacokinetics is an important part of understanding treatment in #haemophilia however it can be a confusing concept for many patients and not always the easiest thing to explain. This #HaemHacks animation aim to give a simple topline explanation of PK and it's relevance in managing haemophilia. #bleedingdisorders #medicine This video was developed by Haemnet and our network of haemophilia nurses, with thanks to Sobi for funding support.

Extended Half-Life Factor Concentrates: Your Questions Answered
You may have heard about "extended half-life factors" as new treatment for #haemophilia...but what actually are they? Check out this #HaemHacks animation where we've provided some simple answers to some of the most frequently asked questions about extended half-life (EHL) factors. #bleedingdisorders #hemophilia #animation This video was developed by Haemnet and our network of haemophilia nurses, with thanks to Sobi for funding support.

The Haemnet story so far... #haemophilia #bleedingdisorders #research

Nurse collaboration at WFH2018 Congress!
"What was it like working together with other haemophilia nurses from across the UK?" Head over to YouTube to watch the full video where nurses and physios share their experiences volunteering in the #WFH2018 treatment room https://youtu.be/WI5fdjplDW4

Living with a Platelet Disorder | HaemHacks
The latest video in our HaemHacks series focuses on living with a platelet disorder. This short animation provides some simple information about platelet disorders, the symptoms you can expect, and the importance of communicating with your care team to ensure you receive the right treatment! Be sure to check out the other animations in our HaemHacks series by following us on Facebook and subscribing to the Haemnet YouTube channel.

What is PK? | Pharmacokinetics explained
Check out the latest video in our HaemHacks series exploring the relevance of pharmacokinetics in haemophilia. HaemHacks are series of educational resources aimed to help nurses and other members of the care team communicate clear and concise information to their patients. You can find previous HaemHacks here on our page, or head over to our YouTube channel where we have a dedicated HaemHacks playlist. We'd love to hear your feedback too, so get involved in the comments section! This video was developed by Haemnet and our network of haemophilia nurses, with thanks to Sobi for funding support. https://www.youtube.com/playlist?list=PLdWSvYDv641QKz0A_j_Ra1Z8tmNRspad4

Extended Half-Life Factor Concentrates: Your Questions Answered
EHL Factor: Your questions answered! Check out our latest HaemHack where we answer some of the most frequently asked questions about Extended Half-Life factor products. Do you still have other questions? Let us know in the comments and your question might be answered in a future HaemHacks video! To keep up to date with the HaemHacks series, be sure to like our page and subscribe to our YouTube channel! This video was developed by Haemnet and our network of haemophilia nurses, with thanks to Sobi for funding support.

Extended Half-Life Factor Concentrates: What You Need To Know
The first video in our HaemHacks series is now live! – “Extended Half-Life Factor: What you need to know” Extended half-life (EHL) factor concentrates are now being used to treat people with haemophilia. You may have heard about these already, but what makes them different to standard factor? In this short animation, we take a look at how they could make a difference to the lives of people with haemophilia. Be sure to like our page and subscribe to our YouTube channel to keep up to date with the HaemHacks series. This video was developed by Haemnet and our network of haemophilia nurses, with thanks to Sobi for funding support.