News

May 10, 2019
Moderate haemophilia ‘neglected’

The available evidence shows that moderate haemophilia is a ‘neglected disease’, according to the eminent Swedish haemophilia specialist Eric Berntorp (Haemophilia 2019 Mar;25(2):187-188). He was commenting on the THUNDER study (Haemophilia 2019;25:205-212). Using Haemtrack data, this suggested that people with moderate haemophilia in the UK are undertreated because their annual bleeding rate and joint status …

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May 9, 2019
Haemophilia Society UK responds to emicizumab concerns

The Haemophilia Society has published advice to its members on recent reports on social media ‘about deaths relating to a new treatment for haemophilia A, Emicizumab (Hemlibra)’ Without providing details of the reports, the Society states: ‘Worldwide over 2,500 people have been using Emicizumab. Although a number of deaths have been reported, these were not …

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AAV antibodies in people with haemophilia

Most gene therapies now undergoing clinical trials rely on a viral vector to achieve transduction of liver cells so that they produce the replacement gene. The majority of vectors are derived from adeno-associated viruses (AAV). AAVs naturally cause infection in humans, provoking an immune response that generates antibodies; individuals with AAV antibodies are ineligible for …

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Bleeding Disorders and Treatment

How the NHS commissions services for rare bleeding disorders
Haemophilia, von Willebrand’s disease and other bleeding disorders affect relatively few people but require a high level of clinical expertise and treatment with expensive drugs. This makes it impractical for individual hospital trusts, health boards or clinical commissioning groups (CCGs)…
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…
Achieving Haemostasis
Strategies for the drug treatment of haemophilia and VWD depend on the risk of bleeding. For haemophilia, replacement FVIII is the treatment of choice for prophylaxis and acute treatment of bleeding Desmopressin may be preferred for patients with mild or…

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…

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…

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…

Horizons

Horizons IV (Amsterdam): The next chapter
The fourth Haemnet Horizons focused on the work undertaken since the previous meeting and to agree next steps in achieving the core objectives, to enhance the role of nurses in future haemophilia services across Europe. For this workshop, we were joined…
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…

Journal


The Journal of Haemophilia Practice is an international, open-access, peer-reviewed journal that accepts papers from all members of the multidisciplinary bleeding disorders care team.

It is owned by Haemnet and published by Sciendo.
Sponsored by:
  • Novo Nordisk
  • CSL Behring
  • Grifols
  • Sobi