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Read more about the article Integrating a greater aHUS patient voice

Integrating a greater aHUS patient voice

  • Post author:Len Woodward
  • Post published:May 16, 2022
  • Post category:Featured
  • Post comments:0 Comments

A final question in the RDD2022 video series on how to integrate a patient voice of experience into aHUS Pharma and…

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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…

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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 No one said it would be easy

No one said it would be easy

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

The reluctant advocate story continues: aHUSUK had received the Evaluation Consideration Document the week before Rare Disease Day 2014 and we…

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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 ESKD 2018 Global Health Summit in UAE

ESKD 2018 Global Health Summit in UAE

  • Post author:ahusalliance
  • Post published:March 26, 2018
  • Post category:Featured
  • Post comments:0 Comments

    Mr Kamal D. Shah, founder of Atypical HUS India and co-founder of India’s largest network of dialysis clinics, was…

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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…

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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 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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