Monthly Archives: June 2016

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Letter from the Presidents: No Brexit for EAHAD and the EHC

Last Friday, 24 June, following the referendum and the decision of a majority of citizens from the United Kingdom (UK) to leave the European Union (EU), we woke up in a different Europe that we neither expected nor hoped for. Besides the political, diplomatic, and economic consequences, the Brexit will have major implications for health care and medical research. These consequences were likely underestimated or even fully ignored by those who voted to leave the EU. This is certainly true for rare diseases such as haemophilia and it is imperative that decision makers now act responsibly to maintain the important developments that Europe has brought to the lives of patients. We would like to assure the rare bleeding disorder community including patients and healthcare professionals from across the EU and the UK that the European Association for Haemophilia and Allied Disorders (EAHAD) and the European Haemophilia Consortium (EHC) remain committed to adequately representing them, improving patients’ lives, and furthering scientific and medical research.read more…

EAHAD statement on publication of SIPPET study results

Inhibitor development is the most serious complication of haemophilia treatment today and is known to occur in approximately 25% of previously untreated patients (PUPs) with severe haemophilia A. The causes of inhibitor development are multi-factorial and include genotype, family history, ethnicity, and the way haemophilia is treated. There has been a long debate as to whether recombinant clotting factor concentrates are associated with a higher risk of inhibitor development as compared to plasma-derived concentrates.

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Consensus meeting on haemophilia nursing guidelines

On 20 April, EAHAD’s nurses committee gathered in Utrecht, the Netherlands for a consensus meeting on guidelines for haemophilia nursing care in Europe. Four experts joined the committee to develop and achieve consensus on three EU nursing guidelines.

 

The following draft guidelines were discussed:

  1. Intravenous administration of clotting factor (peripheral infusion and CVAD)
  2. Education of self-management skills for patients with a bleeding disorder
  3. Nursing care during surgery on a patient with a bleeding disorderread more…