aHUSUK has been the UK’s advocacy organisation for aHUS since September 2011. A registered charity in England Wales and Scotland it, with help from a small number of hardworking unpaid Trustees, and the support of its membership raised the profile of aHUS in the UK and provided the aHUS patient voice to anyone who needed to know about what it is like to live with aHUS and its consequences.
On 3 October 2106 it ceased to be.
To get an overall idea of what it achieved in that time clicke here to see the final aHUSUK blog on its website www.ahusuk.org . The website retains an extensive archive of news blogs and pages about aHUS and the experience of getting a world class decision for the treatment of aHUS in the UK.
But from 4 October 2016 a new chapter has opened for aHUS advocacy in the UK with beginning of Answers for aHUS .
Answers for aHUS has no national title but it represents all those affected by aHUS in the UK. It is a not a charity but something for all in the UK aHUS community to support and to get support for all.
aHUSUK gathered a large number of followers and Answers for aHUS can build on that from the moment that new patients and families encounter aHUS and enter the Expert Centre Treatment Centre in Newcastle upon Tyne , that aHUSUK helped get established.
Answers for aHUS as the name suggests supports research both for raising funds and participation in research, in whichever way people want to get involved; and in doing so give something back for the excellent treatment they now have access to.
Answers for aHUS is also there to protect that world class treatment, as well as support its development to even greater clinical and cost effectiveness. It will provide the authoritative and authentic aHUS Patient Voice, giving answers to anyone who needs to know about aHUS to make decisions.
aHUSUK was a founding affiliate of the aHUS Alliance and Answers for aHUS will continue its work and remain active, supportive and fully involved in global aHUS; providing considerable experience, knowledge and enthusiasm for “good will come together” at national and international levels.
Click here to see Answers for aHUS inaugural blog on its website.
The feature image of Answers for aHUS logo design brings out the rainbow colours and sky background employed by aHUSUK as well as the purple kidney of Kidney Research UK.
