Position Statements

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2020

EAHAD – EHC Joint statement on AAV8-based ASPIRO clinical trial

 
The European Association for Haemophilia and Allied Disorders (EAHAD) and European Haemophilia Consortium (EHC) have become aware of two deaths in patients with X-linked myotubular myopathy (XLMTM) on an AAV8-based gene therapy (AT132) in the phase 1/2 ASPIRO clinical trial conducted by Audentes, a subsidiary of Astellas.
You can read the full statement here
 

EAHAD-EHC Joint Statement on: Promoting hub-and-spoke model for the treatment of haemophilia and rare bleeding disorders using gene therapies

 
The European Association for Haemophilia and Allied Disorders and the European Haemophilia Consortium (EHC) published a joint statement calling on the importance of all first-generation gene therapies to be managed using a hub-and-spoke model.
You can read the full statement here
 

EAHAD-EHC Joint Statement on:Home delivery of treatment products, and supply chain management, during COVID-19 pandemic

 
The European Association for Haemophilia and Allied Disorders and the European Haemophilia Consortium (EHC) published a joint statement calling on the importance of home delivery of treatment during the COVID-19 pandemic so that patients avoid frequent hospital visits. The statement also highlights the importance of preparedness for any disruptions in the treatment supply chain.
You can read the full statement here
 


 

2018

 

EAHAD-EHC Joint Statement on: Promoting central role of haemophilia comprehensive care centres in the treatment of haemophilia and rare bleeding disorders using novel non-replacement therapies

 

EAHAD and the European Haemophilia Consortium (EHC) published a joint position statement on the crucial role of comprehensive care centres in the era of novel non-replacement therapies.

You can read the full statement here

 


 

2016

 

EAHAD statement on publication of SIPPET study results

 

EAHAD comments on the results of the SIPPET study published in the New England Journal of Medicine, which showed a significantly increased risk of inhibitor development with recombinant concentrates as compared to plasma-derived factor VIII (FVIII) products containing von Willebrand factor.

You can read the full statement here

 

 

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

 

Cedric Hermans, EAHAD President, and Brian O’Mahony, EHC President publish a joint letter reaffirming the commitment of the two organisations in representing the rare bleeding disorder community and healthcare professionals from across the EU and the UK, improving patients’ lives, and furthering scientific and medical research.

You can read the letter in full here