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aHUS Patient Voice

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Read more about the article Advocacy punching  above its aHUS weight

Advocacy punching above its aHUS weight

  • Post author:Len Woodward
  • Post published:January 16, 2022
  • Post category:News
  • Post comments:0 Comments

There is so much chat these days about what things should be like after the pandemic. Though it does seem at…

Continue ReadingAdvocacy punching above its aHUS weight
Read more about the article Help needed to join the aHUS dots

Help needed to join the aHUS dots

  • Post author:ahusalliance
  • Post published:November 25, 2020
  • Post category:Featured
  • Post comments:0 Comments

Article No 395 25 November 2020 This was a call to action to the Global aHUS community.( Results to come) It…

Continue ReadingHelp needed to join the aHUS dots
Read more about the article Global aHUS advocacy

Global aHUS advocacy

  • Post author:ahusalliance
  • Post published:June 27, 2020
  • Post category:Featured
  • Post comments:0 Comments

Article No 353 27 June 2020 Participants in the creation of a Global aHUS Patients’ Vision advocated that treatment of aHUS…

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Read more about the article Voicing a  Global aHUS Vision

Voicing a Global aHUS Vision

  • Post author:ahusalliance
  • Post published:June 21, 2020
  • Post category:Uncategorized
  • Post comments:0 Comments

Прекрасным будет тот день, когда наше осознание серьёзности заболевания аГУС/кТМА* поможет добиться того, что пациенты во всем мире смогут позволить себе…

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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
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        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
Read more about the article aHUS Group Expectations for 2018 (continued)

aHUS Group Expectations for 2018 (continued)

  • Post author:ahusalliance
  • Post published:January 4, 2018
  • Post category:Featured
  • Post comments:0 Comments

Following aHUS India's response came two replies from The Netherlands and UK in Europe. Their expectations reflect a very different position…

Continue ReadingaHUS Group Expectations for 2018 (continued)
Read more about the article 4 Myths of Rare Disease Advocacy:  Part 2

4 Myths of Rare Disease Advocacy: Part 2

  • Post author:ahusalliance
  • Post published:December 26, 2017
  • Post category:Featured
  • Post comments:0 Comments

    The SECOND Article in a Four Part Series Rare Disease Advocacy:  Digging deeper into Common Misperceptions   Although there…

Continue Reading4 Myths of Rare Disease Advocacy: Part 2
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