A Patients and Families Support Group

A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

Answers for aHUS gets going

Answers for aHUS gets going

A member of each of four of the two hundred or so families affected by aHUS in the UK attended ,in person or by teleconference,  the first meeting of Answers for aHUS.

Along with representatives from  the “expert centre” in Newcastle and Kidney Research UK  the meeting discussed what might be needed to continue the work of aHUSUK to ensure the UK has the best treatment and care for aHUS.

A key decision was made to move forward to use the FUNdraising 2015 money which now exceeds £50,000 to fund a piece of aHUS research to  enhance knowledge about the disease. More information about how that will be done will given soon.

The meeting heard how the “aHUS Expert Centre” was now being resourced to get the possible outcomes that having the best possible treatment has the potential to bring; but also to deliver a broader patient support service as well, including conferences and patient days.

There still remains a need for an aHUS  patient voice as one thing is for sure things can change and there can be no complacency and if it is necessary the other 196 or so families affected may need to called into action in one way or another.

There will be a fuller account of what was discussed and agreed at the inaugural meeting in a Answers for aHUS newsletter in the next few weeks.

 

 

 

 

 

 

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