A Patients and Families Support Group

A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

REDIRECTION

REDIRECTION

www.ahusuk.org was a key part of the work of aHUSUK  from 2011 until 2016 , when aHUSUK was wound up.

Its  members at the final AGM asked for the website to be kept as a legacy of that period when a minority of UK aHUS patients worked together to get the access to the treatment and specialised service that aHUS patients enjoy today. Without them many more would be living on dialysis now and in the future.

As Professor Tim Goodship once said “… a patient-family support charity (aHUSUK) which has played a pivotal role in lobbying for improved understanding of the disease and better care for those affected.”

But that challenge has been met and the UK now has a world class service for aHUS

So the time has come to bring the curtain down on this website and its activities and pass the torch on to others , where those new to aHUS, or who want to learn more about what is happening in the UK as far as aHUS is concerned, can go for assistance and information.

  1. The National  Renal Complement Therapy Centre‘s website has news and information about aHUS and the NHS specialised service for aHUS. Click here 
  2. Kidney Research UK , the partner for Answers for aHUS has information about aHUS and research into the disease on its website Click here 
  3. Rare Renal has a Rare Disease Group for aHUS and its webpages have information for clinicians and patients about aHUS registries, research and treatment protocols. For the aHUS pages click here 
  4. aHUS alliance is an international aHUS organisation with news and information about aHUS around the world, and provides a lead on aHUS Awareness Day. Click here.
REDIRECTION

REDIRECTION

www.ahusuk.org was a key part of the work of aHUSUK  from 2011 until 2016 , when aHUSUK was wound up. Its  members at the final AGM asked for the website to be kept as a legacy of that period when a minority of UK aHUS patients worked together to get the access to the treatmentContinue Reading

REDIRECTION

REDIRECTION

www.ahusuk.org was a key part of the work of aHUSUK  from 2011 until 2016 , when aHUSUK was wound up. Its  members at the final AGM asked for the website to be kept as a legacy of that period when a minority of UK aHUS patients worked together to get the access to the treatmentContinue Reading

REDIRECTION

REDIRECTION

www.ahusuk.org was a key part of the work of aHUSUK  from 2011 until 2016 , when aHUSUK was wound up. Its  members at the final AGM asked for the website to be kept as a legacy of that period when a minority of UK aHUS patients worked together to get the access to the treatmentContinue Reading

REDIRECTION

REDIRECTION

www.ahusuk.org was a key part of the work of aHUSUK  from 2011 until 2016 , when aHUSUK was wound up. Its  members at the final AGM asked for the website to be kept as a legacy of that period when a minority of UK aHUS patients worked together to get the access to the treatmentContinue Reading

REDIRECTION

REDIRECTION

www.ahusuk.org was a key part of the work of aHUSUK  from 2011 until 2016 , when aHUSUK was wound up. Its  members at the final AGM asked for the website to be kept as a legacy of that period when a minority of UK aHUS patients worked together to get the access to the treatmentContinue Reading

Ready, get SETS, Go!

Ready, get SETS, Go!

The UK Trial of the withdrawal of eculizumab treatment for aHUS patients formally commenced on 1 September. Known as SETS – Stopping eculizumab treatment safely the trial will be the most statistically significant exercise done so far about who can successfully withdraw from treatment and what factors may have determined that success whilst ensuring theContinue Reading

Special T Shirt for aHUS Awareness Day

Special T Shirt for aHUS Awareness Day

During last years aHUS Awareness Day 2016 the aHUS alliance was asked if there were any T shirts available which could be worn to raise awareness. So a T shirt has been designed and are available for purchase from Zazzle who have  turned the design idea into an attractive garment and  are producing e andContinue Reading

AHUS and TMA facts for aHUS awareness day 2017

AHUS and TMA facts for aHUS awareness day 2017

On 24 September it will be aHUS awareness day 2017. This will be the 3rd aHUS awareness day held around the world and it is has been usual for Answers for aHUS and aHUSUK to mark the run in with a series of aHUS information to be aware of. This year the theme is aboutContinue Reading

What is happening at the aHUS Expert Centre?

The National Renal Complement Therapeutics Centre has been up and running for over a year now. It has moved into premises in the Old Children’s Building on the Royal Victoria Infirmary site in Newcastle upon Tyne.   Led by, the now ,Professor David Kavanagh ,the team has reached full complement to tackle Complement in renalContinue Reading