Shouting Loud

Global Voice for aHUS Shouting Loud

In the second survey of aHUS patients around the world, the first was in 2014, international aHUS patient organisations ,including most from Europe , are encouraging aHUS patients and /or their carers to give their views about several rare disease aspects of their disease e.g. problems with diagnosis , access to treatment , ,research and registries and expert advice.

Already more responses from more countries have been received than in 2014 and many more can be expected before it closes on 15 April 2016.

The survey can be accessed via http://www.ahusallianceaction.org/survey/

When the results are compiled a global webinar will follow to allow patients and families to talk about them.

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