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Excellent day with [email protected] picking the brains of Brian O Mahony at IrishHaemophiliaSoc headquarters in Dublin. The Irish hospitality is second to none. We at Haemophilia Society are looking forward to much more collaboration in the future. #bleedingdisorders

The Infected Blood Compensation Authority has launched a social media channel, here on X. Updates can be found Infected Blood Compensation Authority #InfectedBlood

The most devastating news 💔 Jess was the VERY best of us. I said some years ago that she was a future chair of the Haemophilia Society. Our community, and the world, is a far poorer place without her.

Interesting that Chancellor has announced £11.8 billion will be set aside for compensation of infected blood scandal victims - first time a figure has been put on government liability.

We're proud to be part of the newly-formed Haemophilia and Bleeding Disorders Alliance (HBDA), an organisation which brings together support groups and clinical experts to promote the best care and treatment for people living with a bleeding disorder. haemophilia.org.uk/haemophilia-bl…

Next Wednesday (6 November 2024), we'll be holding a webinar to outline everything we know about the state of compensation for estates/bereaved families and answer your questions. Join us online at 6pm on Wednesday haemophilia.org.uk/pi_posts/webin…

Sir Brian Langstaff, chair of Infected Blood Inquiry has criticised the government for excluding siblings who were over 18 when their brother or sister was infected from claiming compensation. In a letter to Nick Thomas-Symonds he said this was not what he recommended. infectedbloodinquiry.org.uk/news/inquiry-i…

Great to see so many friends and supporters at today's Big Get-Together conference in Leicester. It was an invaluable chance to swap experiences and find out more about treatment and care for everyone with a bleeding disorder in the UK.

The Haemophilia Society, along with other charities and campaign groups, has written to Infected Blood Inquiry over concerns that Cabinet Office is damaging the compensation process by its lack of engagement with the infected blood community. haemophilia.org.uk/pi_posts/suppo…

An important step forward, but there remain serious concerns about parts of the govt’s infected blood compensation scheme that need addressing. bbc.co.uk/news/articles/…

Exactly this! Charities are crumbling doing Govt/IBCA work! Thank you Flemo for recognising.

The government has today published draft regulations which will give the Infected Blood Compensation Authority (IBCA) the power it needs to deliver all infected blood compensation scheme payments. Read more here haemophilia.org.uk/pi_posts/new-c…

ICYMI - A new product for severe haemophilia A which reduces the number of treatments needed while increasing the duration of factor cover has been licensed in the UK. Find out more here. haemophilia.org.uk/efa-haemophili…

Are you planning a trip and unsure of how to ensure you can access the support and cover you need? From travel insurance to finding local haemophilia centres, we look at how to ensure your adventures aren't limited by your bleeding disorder. haemophilia.org.uk/support/day-da…

Honoured to be partnering with the The Royal Society of Medicine in hosting our ‘Medicine and Me’ event this afternoon. Excited to explore the future of care and treatment with some exceptional speakers and panelists

To mark Rare Disease Day, we wanted to share findings from a survey our Rare and BDUC working group carried out with healthcare professionals. They wanted a clearer picture of the level of understanding aaround rare bleeding disorders and the appetite for further training

.Infected Blood Inquiry will reopen hearings in May to investigate concerns about lack of progress on compensation. Chair, Sir Brian Langstaff, said the unusual decision 'reflects the gravity of the concerns expressed consistently, and repeatedly, to the inquiry'. infectedbloodinquiry.org.uk/news/inquiry-h…

The infected blood inquiry is hold two more days of hearings to examine the government’s response on compensation. This comes nearly a year after the report was published into the scandal. Victims’ groups say that since then the government has been slow to pay out compensation.

During closing submissions to the Infected Blood Inquiry, a single thread ran through core participants submissions - a fear that government would not be true to the Inquiry’s recommendations. Sadly, that fear has become a reality. Hearings to resume next month.

📢 NHS England has published the draft service spec for #haemophilia & bleeding disorders – first update in 10+ years! Proud to have helped shape it via the Specialised Blood Disorders CRG. Consultation open until 19 June: 📄 bit.ly/haem-spec 🗣️ bit.ly/haem-survey