Local Families with Bleeding Disorders

Support for local families affected by bleeding disorders, by families for families.

[Dr Kate Khair PhD @katekhair]

At #EHC2023 new @haemnet study on FVII deficiency- link to survey in advert below. Please participate- we need to hear your voice

[haemnet @haemnet]

We have launched the FVIID 360 Study!

If you or someone you care for is affect by factor 7 deficiency, take part in our online survey now

https://t.co/t7TaTe8qWy

[Local Families with Bleeding Disorders @LFwBDisorders]

@BloodStreamInfo @LenValentino1 @pjlynch Love this

[Local Families with Bleeding Disorders @LFwBDisorders]

@TheWoollard @stbridelibrary @SustainableRich @ljpembroke @haemnet Thanks for your kind words and support, Laurence ❤️

[Local Families with Bleeding Disorders @LFwBDisorders]

Our brand new animation dropped today as part of our Self Advocacy Event in London....Do you know how best to advocate or what you should expect from your care and treatment?

https://t.co/KpTQAbUUPb

With thanks to @CSLBehring, @haemnet and Woven Ink

#bleedingdisorders

[Local Families with Bleeding Disorders @LFwBDisorders]

We can't wait for our LFWBD day out tomorrow at Bloomsbury Lanes! - Bowling, Karaoke, Pizza, Arcade Games, Table Tennis and Pool.. one more sleep to go!

#haemophilia #hemophilia #vonwillibrands #glanzmanns #Bloomsburylanes

[Local Families with Bleeding Disorders @LFwBDisorders]

LFWBD do the 3 Peaks in 24hrs on 28th July!
Some of our amazing community are taking part in the infamous challenge to raise funds for our group. Want in? Get in touch, the deadline is 28.03!
#bleedingpeaks #threepeaks #bleederscan #24hours #LFWBD

[Local Families with Bleeding Disorders @LFwBDisorders]

First in our 'In Conversation with' webinars for 2023 tonight; we hear from Bonnie, a female with severe haemophilia. Sharing her story and the importance of Dx and understanding for women with Bleeding Disorders. See link on fbk.

#hemophilia #haemophilia #girlswhobleed

[Local Families with Bleeding Disorders @LFwBDisorders]

In July 3 of our fab community advocates with haemophilia are taking on the 3 Peaks Challenge for #LFWBD

Fancy joining them? Want to be part of the support crew? Have a business who would like to sponsor? Come find out more at our webinar this evening at 8!
#yesbleederscan

[Local Families with Bleeding Disorders @LFwBDisorders]

@romankemp Thankyou @romankemp we are @LFwBDisorders a small charity supporting children and families impacted by bleeding disorders. Set up by us families, for families, we come together for social events and support and help children be children first and their conditions coming second.

[Local Families with Bleeding Disorders @LFwBDisorders]

@LFwBDisorders What a fantastic evening together on our Routemaster Tour of Londons Lights and Sights.. our very special Santa too. Happy Xmas from us all at LFWBD

[Local Families with Bleeding Disorders @LFwBDisorders]

**It's Tomorrow!!** One.More.Sleep!!
See you in the morning LFWBD crew for our family day out to the Tower of London and All Bar One. For more info to joining us in our future events, see our website and sign up to the database, link in bio.

@TowerOfLondon @allbarone

[Haemophilia Society @HaemoSocUK]

Hear from expert speakers and share your own experiences at our Rare & Unclassified Bleeding Disorders Day on 25 February at Hilton London Canary Wharf.

A free for members event, booking in advance is advised.

Book now: https://t.co/PAWrE5LSkx

[Local Families with Bleeding Disorders @LFwBDisorders]

All Aboard Our Christmas 2022 LFWBD Family Day Out!! Come hop on board our own Route master Bus seeing the London Lights and Sights! MEMBERS CHECK YOUR EMAILS!!

#LFWBD #routemaster #bleedingdisorders

[Brian O Mahony @Brianhemophilia]

Our paper @haemophilia_jnl examines relationship between FIX level and ABR in mild/moderate haemophilia B. Every 1% increase in FIX level results in ABR decrease of 0.08. Following Gene Therapy, FIX expression of more than 25% should eliminate bleeds and need for prophylaxis

[Local Families with Bleeding Disorders @LFwBDisorders]

Register to find out more about being an ambassador for Women and Bleeding Disorders with @EHC_Haemophilia

[EHC_Haemophilia @EHC_Haemophilia]

There is still time to register for our Women and Bleeding Disorder Ambassador Meeting on 23 November at 19.00 hrs CET.

Register via https://t.co/ee3kneNxEq

[Local Families with Bleeding Disorders @LFwBDisorders]

Fab resource around bleeding disorders and menstruation- thanks @HemeConnect and @HaemophiliaIRL for making us aware!

#girlsbleedtoo #haemophilia #hemophilia #vonwillibrands

[IrishHaemophiliaSoc @HaemophiliaIRL]

This is a great resource that highlights how a girl with a bleeding disorder may experience heavy periods, how to tell if a period is heavy and how these periods may be treated. @HemeConnect

https://t.co/FNJR5vyt19

[Local Families with Bleeding Disorders @LFwBDisorders]

@Haemosexual @APPG_HIV_AIDS @UNAIDS @Winnie_Byanyima @lloyd_rm @ukcab @hrw Much love to you, Mark. Xx

[Local Families with Bleeding Disorders @LFwBDisorders]

Part 2 of Carly's story from @HaemoSocUK
Check out their post below for the link

[Haemophilia Society @HaemoSocUK]

“It’s the looks you get when your child is having a minor (for VWD standards) bleed and you have to continue life as normal with blood coming from their nose or mouth and both of you in blood-stained clothing."

Read part 2 of Carly’s blog series: https://t.co/F1Ea3cmLQb

[Local Families with Bleeding Disorders @LFwBDisorders]

A series of patient voice stories from @HaemoSocUK , Carly talks about having a daughter with Von Wilibrands.

[Haemophilia Society @HaemoSocUK]

Knowing how isolated you can sometimes feel when affected by a rare disorder, one of our members, Carly, is sharing her story with us in a series of blogs.

Read the first part here: https://t.co/gF7vHI06Jm