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Healthcare at Home – product recall statement

Healthcare at Home – product recall statement

Healthcare at Home have been advised by the Medicines and Healthcare products Regulatory Agency (MHRA) that the sterility of some infusion devices and ancillary products supplied to some patients cannot be guaranteed due to quality issues. Healthcare at Home have been informed that the manufacturer of these products is recalling

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Take part in the Coping with COVID-19 Community Survey

This survey aims to examine the impact of the current COVID-19 pandemic on the mental health of people with an Inherited Bleeding Disorder (IBD) across Germany, the United Kingdom (UK) and the USA. The purpose of this survey is to: Assess the COVID-19 associated impact and psychological challenges facing the

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The Haemophilia Society responds to NICE Consultations

Starting in 2020, NICE has been running a series of consultations looking at their processes for health technology evaluations. While new technologies, such as Emicizumab for Haemophilia A, have been adopted recently we have concerns with how NICE reviews treatments and worry that their processes unnecessarily delay access to new treatments. NICE

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Race around the world with our Yorkshire local group

Our Yorkshire local group has recently reformed with an aim to raise awareness of bleeding disorders, develop local support networks, generate funds for future events alongside providing funding for a portable ultrasound unit for the children’s service to improve joint health and knowledge.  They have launched Race Around the World, where patients,

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Show your support on Rare Disease Day 2021

In the UK there are over 36,000 people with a rare genetic bleeding disorder such as haemophilia, Factor VII deficiency, Glanzmanns or von Willebrands. This year’s #RareDiseaseDay theme is ‘Rare is many, Rare is strong, Rare is proud‘ Celebrated every year on the last day of February, Rare Disease Day

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Fitusiran update following EAHAD 2021 Congress

During the Congress of the European Association for Haemophilia and Allied Disorders (EAHAD) in early February 2021, Sanofi presented its revised fitusiran dosing regimen proposed to mitigate the risk of vascular thrombosis. There is no change to the bleed management guidelines during fitusiran prophylaxis. You can read the full statement here: https://news.wfh.org/fitusiran-update-following-eahad-2021-congress

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EHC publishes update on the nasal desmopressin spray recall

In 2020 manufacturer Ferring issued a voluntary, worldwide recall of its desmopressin-containing nasal sprays including Octim®, Octostim®, Desmospray®, DDAVP Spray® and Stimate®. This recall was prompted by higher-than specified concentrations of desmopressin in the manufactured vials. The EHC has been informed that the issue causing this problem was identified and that

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