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aHUS Alliance Global Action

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Read more about the article aHUS Global Action – Meet Trustee K Grey

aHUS Global Action – Meet Trustee K Grey

  • Post author:Linda Burke
  • Post published:January 28, 2023
  • Post category:Featured
  • Post comments:1 Comment

As advocates for the rare disease atypical haemolytic uraemic syndrome (atypical HUS), there’s only one group of patients and caregivers whose…

Continue ReadingaHUS Global Action – Meet Trustee K Grey
Read more about the article aHUS website refreshed

aHUS website refreshed

  • Post author:ahusalliance
  • Post published:September 4, 2021
  • Post category:Featured
  • Post comments:0 Comments

Article No. 456 From today the aHUS alliance Global Action website has a new look. Just over five years since it…

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Read more about the article Update: aHUS Diagnosis Process Study

Update: aHUS Diagnosis Process Study

  • Post author:ahusalliance
  • Post published:March 1, 2021
  • Post category:Featured
  • Post comments:0 Comments

Article No. 421 1 March 2021 There is no doubt that with the response by the aHUS Patient community to the…

Continue ReadingUpdate: aHUS Diagnosis Process Study
Read more about the article Ravulizumab costs less over a life time

Ravulizumab costs less over a life time

  • Post author:ahusalliance
  • Post published:November 23, 2020
  • Post category:Featured
  • Post comments:0 Comments

Article No 394 23 November 2020 In an article on 16 October 2020 (No 388) aHUS Global Action derived a cost…

Continue ReadingRavulizumab costs less over a life time
Read more about the article Challenges for the new aHUS year- “Bring it on”

Challenges for the new aHUS year- “Bring it on”

  • Post author:ahusalliance
  • Post published:December 27, 2018
  • Post category:Featured
  • Post comments:0 Comments

Another year has ended for those affected by aHUS. For some sadly it would have proven to have been their last.…

Continue ReadingChallenges for the new aHUS year- “Bring it on”
Read more about the article aHUS and TMA Study Centers

aHUS and TMA Study Centers

  • Post author:ahusalliance
  • Post published:April 15, 2018
  • Post category:Featured
  • Post comments:0 Comments

    aHUS and TMA Study Centers An International List Compiled by the aHUS Alliance     Atypical HUS is difficult…

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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…

Continue ReadingThe Many Faces of Atypical HUS: Rare Disease Day 2018
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)
Read more about the article Pathways of Patient Engagement – 4 Myths of Rare Disease Advocacy: Part 3

Pathways of Patient Engagement – 4 Myths of Rare Disease Advocacy: Part 3

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

        4 MYTHS of Rare Disease Advocacy:  Digging deeper into Common Misperceptions Pathways of Patient Engagement & Recruitment…

Continue ReadingPathways of Patient Engagement – 4 Myths of Rare Disease Advocacy: Part 3
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