The Atypical HUS Foundation

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Featured Discussions

aHUS Complications: Potential Impact for Multiple Organs

 Atypical HUS - It's Not Just About Kidneys       The topic of aHUS complications has surfaced in multiple commentary, including aHUS co…

Started by Linda BurkeLatest Reply

RESEARCH Forum

Hello all, I'd like to create a place where current research articles can be posted and sorted by topic. If you encounter a published stud…

Started by Joy Lewis O'BrienLatest Reply

Discussions Replies Latest Activity

What are the aHUS triggers? Is there any recent research identifying them?

We so far know that aHUS has some genetic mutations and complement issues associated with it. However I think we are missing a big piece of…

Started by Colette Ann Frysz

14 Oct 24
Reply by Len Woodward

ADULTS with aHUS

 Over the past couple of years, new information about atypical HUS has been slowly filtering from the research and clinical arenas into jou…

Started by Linda Burke

191 May 15
Reply by Donnan Oyler

aHUS Family History and North Devon

Just as a deviation from the current activity in the UK in getting eculizumab for the treatment of all aHUS  patients who need it, I am sta…

Started by Len Woodward

7 Aug 28, 2016
Reply by Len Woodward

To test or not to test?

Hi! I was diagnosed with AHUS in October. My genetic testing showed that I have a mutation in the CD46 gene, autosomal dominant. I have 4 c…

Started by Tricia

2 Apr 28, 2016
Reply by Debbie Griggs

Seizures

I've seen a few people mention seizures as part of Atypical HUS. We are watching Nathan closely since he has had seizures due to fevers and…

Started by Cheryl Biermann

13 Apr 6, 2016
Reply by Cheryl Biermann

aHUS websites

As someone who for four years has had the task of introducing and maintaining a website on behalf of the UK's aHUS patient organisation I c…

Started by Len Woodward

0 Dec 26, 2015

aHUS websites

As someone who for four years has had the task of introducing and maintaining a website on behalf of the UK's aHUS patient organisation I c…

Started by Len Woodward

0 Dec 26, 2015

We are new here.. 5 years old Josef diagnosed with aHUS recently.. May I ask you parents a few questions?

Hello everyone.. my older son Josef / 5 yrs old was recently diagnosed with aHUS .. Doctors said he did well so far, did not require dialys…

Started by Jana Kacerova

0 Nov 13, 2015

aHUS patients that have received a negative genetic test but have had a further episode.

Hi, I recently had a severe episode of aHUS and nearly lost my life - the genetic tests came back negative but only for what they know they…

Started by Debbie Montagnon

0 Oct 14, 2015

ahus Foundation

Does anyone know if there are brochures or fliers available with information on the ahus Foundation? I need 500 for an event I'm hosting.…

Started by Crystal Gimenez

2 Aug 14, 2015
Reply by Linda Burke

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