Report on CMV Action attendance at the European Congenital Cytomegalovirus Initiative (ECCI)

     

Sharon Wood, our Project Manager, attended the ECCI Conference on the island of San Servolo, in the beautiful city of Venice from 24th-26th April 2016.

Apart from the wonderful venue, this meeting gave CMV Action an excellent opportunity to meet and speak with a variety of leading specialists and researchers in the field from around the world, and to take part in special sessions for families as well as a round table discussion on opportunities for collaboration.

Whilst attendance by families and patient groups from Europe and beyond was sparse, Sharon was able to suggest that the cost of attendance, as well as the difficulties faced by parents caring for a child affected by CMV, were probably the main reasons for the poor take-up and as the medics agreed that their perspective at these events was very valuable, that a bursary or other assisting measure to encourage future attendance would be useful.

Whilst families were generally not present, CMV Action was able to represent youngsters in the UK with a slide show of their experiences of CMV and their positive outlook and achievements in life.  Thanks to all those who took part and told their stories - this was much appreciated by the medics making up the large proportion of the audience.

Sharon was also able to address the conference with a presentation reporting back on the survey conducted by St. George’s University, London and CMV Action on CMV Knowledge and Attitudes Amongst Professionals Working in Ante-natal care in the UK.  The survey results highlighted the clear gap between professional willingness to discuss CMV risk reduction and the knowledge they need to do so effectively.  Having presented the key findings (also detailed on a poster displayed during breaks), Sharon went on to describe the programme of work and the strategy CMV Action are developing to address some of the problems emphasised by the survey.

This prompted many conversations during coffee and lunch breaks – especially from countries who had no experience of charities or where no charities exist and who wanted a CMV Action there! 

Overall, it was an excellent conference and although some of the presentations were extremely scientific, it proved what fantastic work is going on around the world to combat CMV. 

The conference ended with an agreement to work collaboratively to look at European funding for research and CMV Action agreed to be a partner to this and a conduit to parents and families affected by the condition.

Addio bella Venezia!

     

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