The Atypical HUS Foundation

John Exton
  • Male
  • York
  • United Kingdom
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John Exton's Friends

  • Ian Mackersie
  • Len Woodward
  • Lisa Barker
 

John Exton's Page

Profile Information

Birthday
February 3
Do you have a friend or family member diagnosed with aHUS?
Yes
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My membership request involves business interests as I seek additional aHUS information for business applications.
l
My child ( or myself as a patient) is best described as:
Factor I (CFI)

Comment Wall (3 comments)

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At 4:33pm on February 23, 2012, Ian Mackersie said…

Hello John,

As you will have seen already, you are not alone. You've already heard from my colleague Len Woodward. Len is treasurer and I am secretary of aHUSUK, a registered charity recently set up to support people with aHUS and their families in UK. Our members either have the disease, or like Len and me, have close family with it. Among other things, the charity is heavily involved in campaigning for central funding both for eculizumab and a national research and treatment centre for aHUS in Newcastle. If you would like to know more about what we are doing please have a look at our website. www.ahusuk,org. If you would like to join us please contact me via the website.         

At 8:01am on February 23, 2012, Len Woodward said…

Hi John

 

Welcome to the site you will soon see there are others from the UK here to!

There has been a lot going on in the UK, if you have followed the UK Patients Forum thread you may have gathered that!

The aHUSUK community is growing with over 50 patients and families now in touch and helping support the treatment developments in the UK.

Hope to hear from you.

Len

www.ahusuk.org

 

 

 

 

 

 

look forward 

At 12:05am on February 23, 2012, Linda Burke said…

Hi John,

We are looking forward to an update about the efforts of the UK aHUS community, with hopes of progress in your efforts to provide broader access to those UK patients wishing to utilize Soliris therapy for aHUS.

 
 
 

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