Videos

This short animation in our HaemHacks series focuses on living with a platelet disorder. It provides some simple information about platelet disorders, the symptoms patients can expect, and the importance of communicating with the care team to ensure they 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.

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News

November 6, 2018
Adherence and factor replacement therapy

About one-fifth of adults, young people and children have problems with adherence to factor replacement therapy, according to a systematic review of 16 studies from Canada (Patient Prefer Adherence 2018 Oct 8; doi: 10.2147/PPA.S177624). The analysis, using a framework adapted from research in people with diabetes, found that some studies had focused attention on factors …

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Exercise and haemophilia

The haemophilia community is now past the stage where opinion leaders say exercise is a good thing, with increased activity and sports participation widely promoted for everyone – as appropriate individually, of course. A recent review from Sweden provides a marker of progress in research and clinical thinking to date (Semin Thromb Hemost 2018 Oct …

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rVWF prophylaxis during elective surgery

A multinational trial involving eleven centres, including NHS services in Oxford and London, has shown that recombinant von Willebrand factor (rVWF) is safe and effective as prophylaxis during elective surgery in people with severe von Willebrand’s disease. Fifteen patients undergoing major, minor or oral surgery received rVWF 40-60 IU/kg one hour before surgery and postoperatively …

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Bleeding Disorders and Treatment

Bleeding Disorders 101
Congenital bleeding disorders are characterised by impaired blood clotting, usually due to an inherited deficiency in or abnormal functioning of a clotting factor. There are many types (depending on which clotting factor is affected) but, with three exceptions, they are…
Care of Bleeding Disorder Patients
The primary aim of care is to prevent and treat bleeding with the deficient clotting factor but optimal care requires more than the treatment of acute events. The following recommendations are based on WFH guidelines [WFH, 2013] but the principles…
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Practice points

Ensuring the Safety of Medicines for Haemophilia
A medicine’s journey from laboratory bench to bedside is a highly regulated process – one that takes years. Trials involve thousands of people who take a compound that may or may not become a medicine and for which the risks…
What is pharmacokinetics?
Pharmacokinetics is the science of what happens to drugs in the body (drug disposition). It uses mathematics to quantify the drug’s journey from absorption to distribution, metabolismand elimination and describes how these processes change over time and in relation to one another.…
EHL factor concentrates
Haemophilia is an X-linked inherited bleeding disorder characterised by reduced levels of Factor VIII or IX levels (haemophilia A and B) respectively [Shrivastava et al, 2013]. In its severe form (FVIII or IX <0.01IU/dl) haemophilia results in recurrent joint and…
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Nursing

Haemophilia Nursing
Haemophilia nurses are pivotal members of the haemophilia multidisciplinary team. They support patients and carers within the hospital, the community and at home, encouraging active lives and full participation with peers. As well as providing support, haemophilia nurses educate about…
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Physiotherapy

Haemophilia Physiotherapy
Haemophilia is associated with very specific musculoskeletal consequences. Haemophilia physiotherapists are increasingly recognised as the professional experts to deal with these issues. The comprehensive care model of haemophilia is associated with better survival, less risk associated with accidents/surgery and more…
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Horizons

Horizons I (Amsterdam): Leading Haemophilia Nursing into the Future
Haemnet convened Haemophilia Horizons, a roundtable discussion of the professional and educational issues impacting on the future shape of haemophilia nursing in Europe. There was a strong focus on identifying the opportunities likely to arise in this changing landscape and…
Horizons III (London): Keep Moving On
The third Haemnet Horizons workshop was attended by 19 nurses from 11 countries. The meeting was supported by an educational grant from Sobi and CSL Behring. The purpose of the workshop was to hear about the work undertaken since Berlin…
Horizons II (Berlin): Developing Communities of Practice
Haemnet convened Haemophilia Horizons I in October 2016 and Haemnet Horizons II in July 2017. People with haemophilia and their clinical teams across Europe are responding to an evolving treatment landscape and the nurses at both events are keen to…
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