A Patients and Families Support Group

A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

Updates  from the aHUS Centre

Updates from the aHUS Centre

The second news letter is being sent out from the aHUS team at Newcastle upon Tyne. A copy can be read below click on “May 2017”

May 2017

There is news about the Centre’s services, including twice monthly clinics for any one in England, information about the Centre’s team as well updates on fundraising activities for Answers for aHUS.

There is also some explanation why a google search for “aHUS” brings up the issue of “Alabama Rot”  !!!

As well as breaking news that at least one aHUS patient has been recruited to the ALXN 1210 drug trial. For now this can only be trialed on new onset aHUS patients.

This drug still has the active ingredient eculizumab, but it has been modified to last longer; probably there will be an interval of 8 weeks between infusions. There is no information about the price of this version of eculizumab; but let us hope that the opportunity is taken to substantially improve cost effectiveness, so that more aHUS patients can benefit when needed for as long as is needed.

 

 

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