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Read more about the article aHUS Trials Watch 5

aHUS Trials Watch 5

  • Post author:ahusalliance
  • Post published:March 7, 2018
  • Post category:Featured
  • Post comments:0 Comments

An update on STOPECU ( NCT02574403)  -the French Study of the withdrawal from eculizumab treatment which began in late 2015. ( click…

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Read more about the article aHUS Rare Disease Day 2018 Cohort- Report 1

aHUS Rare Disease Day 2018 Cohort- Report 1

  • Post author:ahusalliance
  • Post published:March 7, 2018
  • Post category:Featured
  • Post comments:0 Comments

Rare Disease Day 2018 had the theme of research. As its contribution to Rare Disease awareness this year , the aHUS…

Continue ReadingaHUS Rare Disease Day 2018 Cohort- Report 1
Read more about the article The Many Faces of Atypical HUS:  Rare Disease Day 2018

The Many Faces of Atypical HUS: Rare Disease Day 2018

  • Post author:ahusalliance
  • Post published:March 5, 2018
  • Post category:Featured
  • Post comments:0 Comments

    What happens after the world annually marks Rare Disease Day on the last day of February? We carry on…

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Read more about the article Creating Your Advocacy Footprint in the Rare Disease Arena

Creating Your Advocacy Footprint in the Rare Disease Arena

  • Post author:ahusalliance
  • Post published:February 25, 2018
  • Post category:Featured
  • Post comments:0 Comments

    What does the term ‘rare disease advocacy’ mean to you?  Patients and caregivers speaking up on social media or…

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Read more about the article aHUS Trials Watch 4

aHUS Trials Watch 4

  • Post author:ahusalliance
  • Post published:February 21, 2018
  • Post category:Featured
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Some news about trials affecting those with aHUS; but at two ends of the clinical research spectrum. The first is about…

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Read more about the article Transplant and aHUS Risks

Transplant and aHUS Risks

  • Post author:ahusalliance
  • Post published:February 9, 2018
  • Post category:Featured
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The aHUS Alliance was invited by the aHUS Registry Scientific Board to say what matters most to patients in aHUS research.…

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Read more about the article aHUS Patients have a value beyond the balance sheet

aHUS Patients have a value beyond the balance sheet

  • Post author:ahusalliance
  • Post published:February 6, 2018
  • Post category:Featured
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It was little known, but Alexion decided years ago that it would reinvest 40% of any of its profits from the…

Continue ReadingaHUS Patients have a value beyond the balance sheet
Read more about the article They do not get it , or do they?

They do not get it , or do they?

  • Post author:ahusalliance
  • Post published:February 1, 2018
  • Post category:Featured
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Everyone gets ill at some time don't they? Whether it is for example  a cold, stomach upset or measles, people know…

Continue ReadingThey do not get it , or do they?
Read more about the article Patients Included:  Reality or Unmet Goal? (#4: MYTHS of Rare Disease Advocacy)

Patients Included: Reality or Unmet Goal? (#4: MYTHS of Rare Disease Advocacy)

  • Post author:ahusalliance
  • Post published:January 16, 2018
  • Post category:Featured
  • Post comments:0 Comments

    The Last in the aHUS Alliance Four Part Series Patients Included: Reality or Unmet Goal? 4 MYTHS of Rare…

Continue ReadingPatients Included: Reality or Unmet Goal? (#4: MYTHS of Rare Disease Advocacy)
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