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Read more about the article Really, isn’t everyone aware of aHUS by now?

Really, isn’t everyone aware of aHUS by now?

  • Post author:ahusalliance
  • Post published:September 1, 2019
  • Post category:Featured
  • Post comments:0 Comments

Look at any charity/ not for profit organisation related to health and the term “awareness” will be there in what they…

Continue ReadingReally, isn’t everyone aware of aHUS by now?
Read more about the article An aHUS Patient Entrepreneur ?

An aHUS Patient Entrepreneur ?

  • Post author:ahusalliance
  • Post published:August 28, 2019
  • Post category:Featured
  • Post comments:0 Comments

After reading an  inspirational article* about Kamal Shah , which featured on the alliance’s social media recently, I was reminded about…

Continue ReadingAn aHUS Patient Entrepreneur ?
Read more about the article aHUS Registry Report: (aHUS) Registry

aHUS Registry Report: (aHUS) Registry

  • Post author:ahusalliance
  • Post published:August 19, 2019
  • Post category:Featured
  • Post comments:0 Comments

The alliance relationship with the atypical Hemolytic-Uremic Syndrome( aHUS) Registry (NCT01522183) is now well into its fifth year. This observational non…

Continue ReadingaHUS Registry Report: (aHUS) Registry
Read more about the article Eculizumab Safety

Eculizumab Safety

  • Post author:ahusalliance
  • Post published:August 18, 2019
  • Post category:Featured
  • Post comments:0 Comments

Following on from its recent article about the safety of eculizumab ( see here ) the alliance has looked at two…

Continue ReadingEculizumab Safety
Read more about the article “Away from home” Eculizumab infusions

“Away from home” Eculizumab infusions

  • Post author:ahusalliance
  • Post published:August 18, 2019
  • Post category:Featured
  • Post comments:0 Comments

Within the aHUS Patients' Research Agenda is a topic about how aHUS affects work and school. A big question with so…

Continue Reading“Away from home” Eculizumab infusions
Read more about the article aHUS Awareness Day 2019 -Video

aHUS Awareness Day 2019 -Video

  • Post author:ahusalliance
  • Post published:August 3, 2019
  • Post category:Featured
  • Post comments:0 Comments

2019 aHUS Awareness Day - Atypical HUS families around the world are invited to participate in this aHUS Alliance outreach & advocacy project for 24 September. Slideshow project details for patients and caregivers affected by the rare disease aHUS.

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Read more about the article Global Patient Advocacy-aHUS ROW

Global Patient Advocacy-aHUS ROW

  • Post author:ahusalliance
  • Post published:July 3, 2019
  • Post category:Featured
  • Post comments:0 Comments

When the six European national aHUS organisations gathered in February 2013 for the first meeting of what was to become the…

Continue ReadingGlobal Patient Advocacy-aHUS ROW
Read more about the article aHUS Registry Report: ERKNet

aHUS Registry Report: ERKNet

  • Post author:ahusalliance
  • Post published:June 27, 2019
  • Post category:Featured
  • Post comments:0 Comments

The aHUS alliance has a  long association with the Global aHUS Registry and has a place on its Scientific Advisory Board…

Continue ReadingaHUS Registry Report: ERKNet
Read more about the article Eculizumab- safe or not?

Eculizumab- safe or not?

  • Post author:ahusalliance
  • Post published:June 12, 2019
  • Post category:Featured
  • Post comments:0 Comments

aHUS patients and carers raised the research topic : "Can the side effects of treatment using a complement inhibitor be distinguished…

Continue ReadingEculizumab- safe or not?
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