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. EHC and EAHAD are closely monitoring developments in this area due to this adeno-associated viral vector (AAV8) also being used in haemophilia gene therapy trials.

The Covid-19 pandemic has caused a multi-dimensional crisis: medical, psychological, economic, occupational, and educational and more. People with bleeding disorders have suffered anxiety and concern regarding the influence of Covid-19 on their condition as well as uncertainty as to whether their treatments will continue to be accessible during this pandemic.

Hosted by Prof. Michael Makris and with three insightful presentations by Prof. Víctor Jiménez Yuste, Prof. Flora Peyvandi, and Prof. Cedric Hermans, the EAHAD Webinar on Covid-19 and Haemophilia (originally streamed on Tuesday 2 June 2020) is now available for everyone to watch.

By Dr Sébastien Lobet, EAHAD Physiotherapists Committee past Chair   Dear Piet,

By Paul McLaughlin, EAHAD Physiotherapists Committee Vice-Chair   The 14th annual general meeting of the UK Haemophilia Chartered Physiotherapists Association (HCPA) was held on 5 and 6 March 2020.

  On 4 February 2020 in The Hague, Netherlands, the Physiotherapists Committee welcomed colleagues from Europe and around the world to the EAHAD Multidisciplinary Pre-Congress Day physiotherapy sessions.

For the past three decades, haemophilia A and B have been treated using FVIII and FIX replacement concentrates, and their treatment and care has been managed through comprehensive or standard haemophilia treatment centres.

On Thursday 6 February 2020, the EAHAD Annual General Meeting took place in The Hague, Netherlands. During the meeting, the EAHAD members voted and elected Professor Flora Peyvandi as the new president of our association. Prof. Peyvandi succeeded Prof. Michael Makris and will hold the position for the next two years (February 2020-February 2022).   To get to know more about Prof. Peyvandi’s background, her vision and plans for EAHAD over the next two years, we asked her to answer a few questions.  

The European Association for Haemophilia and Allied Disorders and the European Haemophilia Consortium (EHC) published today 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.

At the EAHAD 2020 Congress, in The Hague, Netherlands, we honoured professionals who have made exemplary contributions to the haemophilia and allied disorders community in Europe and around the world with the EAHAD Recognition Award for Outstanding Contribution to the Haemophilia and Allied Disorders field. One of the recipients is Mr Brian O’Mahony, Chief Executive Officer of the Irish Haemophilia Society. We took the opportunity to interview Mr O’Mahony on his background, his views on the current access to treatment for people with haemophilia, as well as the role of the patient haemophilia community in the age of new treatments.