Talking Red from the Haemophilia Society

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Talking Red from the Haemophilia Society

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Talking Red wants you and all women to be more aware of the symptoms of a bleeding disorder so that you can ask for a diagnosis and receive the care that you deserve.

22/05/2022

Over half of people with a bleeding disorder in the UK are women but standards of care vary wildly and many struggle to get the recognition they need.

This is why it was so important that this weekend saw the second ever European conference dedicated to the impact that bleeding disorders have on women and girls.

Jeff, our Policy & Public Affairs Manager, attended the event in Basel with Women’s Working Group member Bonnie Charles and our Trustee Jo Traunter (L-R above) with together with other haemophilia societies from right across Europe and North America.

They discussed what good care looks like, and shared strategies for advocating for better outcomes...

Read more https://tinyurl.com/35scp6zc

21/05/2022

On the opening Day of the European Haemophilia Consortium (EHC) Women & Bleeding Disorders conference we heard a really fascinating presentation from Rezan Kadir & Keith Gomez from London's Royal Free Hospital on the vital role of the multi-disciplinary team in supporting women with VWD during fertility treatment and childbirth.

There are more women with bleeding disorders than men but often they are often under-recorded in national haemophilia databases. Declan Noone from the EHC gave a great talk on finding these “missing women” and collecting better data on the impact of bleeding disorders on women.

For women with bleeding disorders, symptoms such as heavy menstrual bleeding, impact on their quality of life but may not reach the threshold where people seek medical help. Declan Noone from the European Haemophilia Consortium calls this the “coping gap.”

20/05/2022

It’s the European Haemophilia Consortium’s Women’s Conference 2022 this weekend.

Jeff, our Policy & Public Affairs Manager, will join our trustee Jo Traunter, and our women’s committee member Bonnie Charles, at the conference to hear the latest news and thinking around women and bleeding disorders. It looks a pretty full-on couple of days, but it will be worth it!

15/05/2022

Mental Health Awareness Week officially ends today, but that doesn't mean we should stop the focus on our mental health.

Having a bleeding disorder places extra demands on people and families, and sometimes it helps to talk to someone outside of your usual circle.

If you or someone close is feeling the strain, ask your haemophilia centre if they can refer you for support locally. Everyone needs a little extra support sometimes.

Find out more https://tinyurl.com/2p865py2

14/05/2022

Last month nearly 100 people completed our Talking Red Symptom Checker, to get to know the symptoms of a bleeding disorder in women and girls, and find the confidence to ask for medical support.

If you, or someone you know has some of the symptoms, such as frequent nosebleeds and heavy periods, why not take a look too?

https://tinyurl.com/37txhsr5

02/05/2022

If you or someone you know is affected by VWD (von Willebrand disorder), you might find our freshly updated booklet a handy guide.

It looks at diagnosis, types of VWD, special issues for women, special issues for men, managing the condition at different stages of life, and much more.

View or download the booklet here:
https://tinyurl.com/yckm67bu

Alternatively, if you’d like to be sent a printed copy in the post, please email us at [email protected]

28/04/2022

If you are thinking about your child starting or moving school in September, or beginning nursery school, then you might like to take a look at our Schools booklet, which is newly updated.

This booklet is full of useful advice and information, for example about how to manage periods in the classroom, or manage medication at school. You can view the booklet online, or download it from here https://tinyurl.com/5ffzhhr7

Also, if you get in touch, we can send you several copies of the booklet through the post. This is really handy, as the booklet has not only been written with parents in mind, but it’s perfect for sharing with teachers so that they feel informed and supported in managing any difficulties that may arise with your child.

If you’d like some copies, please email us at [email protected]

02/04/2022

If you want to be part of the Talking Red Community, and continue to chat and share experiences about being a woman or girl living with a bleeding disorder, join our private Talking Red Community Facebook Group 👇

https://tinyurl.com/4mzvuwxj

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52b Borough High Street

SE11XN

Website

http://www.haemophilia.org.uk/

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