As 2016 comes to a close, the output from the 2015 KDIGO Controversy Conference about aHUS and C3G ( MPGN & DDD) is published. See copy by clicking here
The conference which was attended by some of the world’s best known aHUS Researchers sets out the definitive description of aHUS , how it can be diagnosed and how to treat it best. It does so by also identifying the current knowledge gaps which need to be addressed.
The aHUS alliance participated directly at the conference with affiliates from USA – Linda Burke and Spain- Mireya Carratala and Francisco Montfort; and subsequently with a collaborative alliance review of the draft paper. Yet again patients are participating in research into their disease at global research network level.
One overall observation coming out of the paper is that although those with aHUS are in a more favourable position than those with C3G in terms of understanding of the disease , its diagnosis and treatment, “secondary” aHUS needs much more attention.
