The 2016 Global aHUS Survey has provided a lot of insights into the global aHUS community. A further paper has recently been added to the Info Centre about Access to Eculizumab around the world , it can be read by clicking here .
Just recently aHUS social media has featured a story about a young girl in India who has died because of lack of access to the complement inhibitor eculizumab. There is an harrowing account of what happened by alliance affiliate aHUS India on its website. To read click on the cartoon below
The reality of what is behind the “rest of the world” statistics is encapsulated in this young girl’s encounter with aHUS. She had the Wrong Genes in the Wrong Place.
Someone needs to be aware and someone needs to care.
Someone needs to find a way out.
