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A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

3 October is the date for aHUSUK to bow out

3 October is the date for aHUSUK to bow out

The date has been set for aHUSUK dissolution. It will be on 3 October 2016.

There will be some paperwork to conclude and then the charity  will be removed from the registers in England & Wales and Scotland.

It is now just over five years since aHUSUK was formed and much has been achieved in that time and aHUSUK has established an excellent reputation for aHUS advocacy in the UK and throughout the world.

aHUS is very rare and there are not many of us, and the charity had to rely on the trustees to do the actual  work of the charity as well as manage it . Compare aHUSUK with the organisation whose members benefit from the second and third most expensive drug in the world and you will find that it employs more than ten people in dedicated accommodation; and has  a similar number of Trustees.

aHUSUK, although it has had grants to support activities, has depended on unpaid volunteers working together for many hours each year to do what it has done for the past five years. Trustees have come and trustees have gone and for the few who are left the job as set out originally is done.

One thing learned about aHUSUK members  too is that when a challenge is given to  them they respond magnificiently and they are just a small minority  of all those affected by aHUS in the UK. Imagine if the majority were engaged.

Whilst it is normal for those getting treatment from the NHS to not think about how that treatment became available for those with rare diseases it is less so because frequently such treatment is hard fought to get and maintain.

UK aHUS patients have a world class treatment available from the NHS right now and it needs to be kept that way.

It soon to be time to pass on the baton to Answers for aHUS to provide something for all in the UK aHUS community to support and help aHUS  research and give aHUS voice to continue to get the best treatment for aHUS patients.

 

 

 

 

 

 

 

 

 

 

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