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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
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 aHUS Patient Group Expectations of 2018- India

aHUS Patient Group Expectations of 2018- India

  • Post author:ahusalliance
  • Post published:January 2, 2018
  • Post category:Featured
  • Post comments:0 Comments

The alliance has asked all the affiliated aHUS organisations and groups to provide their thoughts on what they expect to happen…

Continue ReadingaHUS Patient Group Expectations of 2018- India
Read more about the article An open letter to Alexion for 2018

An open letter to Alexion for 2018

  • Post author:ahusalliance
  • Post published:January 1, 2018
  • Post category:Featured
  • Post comments:0 Comments

1 January 2018 Dear Alexion As you know aHUS is a life threatening and debilitating condition. You have the only treatment…

Continue ReadingAn open letter to Alexion for 2018
Read more about the article Does the aHUS alliance add value?

Does the aHUS alliance add value?

  • Post author:ahusalliance
  • Post published:December 27, 2017
  • Post category:Featured
  • Post comments:0 Comments

Adding value in patient advocacy is obvious. Or is it? Those involved in patient advocacy constantly ask themselves “Am I achieving…

Continue ReadingDoes the aHUS alliance add value?
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
Read more about the article 4 MYTHS of Rare Disease Advocacy

4 MYTHS of Rare Disease Advocacy

  • Post author:ahusalliance
  • Post published:December 20, 2017
  • Post category:Featured
  • Post comments:0 Comments

              The FIRST Article in a Four Part Series Rare Disease Advocacy:  Digging deeper into…

Continue Reading4 MYTHS of Rare Disease Advocacy
Read more about the article Transplantation and aHUS – a top topic

Transplantation and aHUS – a top topic

  • Post author:ahusalliance
  • Post published:December 18, 2017
  • Post category:Featured
  • Post comments:0 Comments

Transplantation of aHUS dialysis patients is a priority and  top topic for the aHUS alliance. Transplantation of those with aHUS  has…

Continue ReadingTransplantation and aHUS – a top topic
Read more about the article TRY THE CHRISTMaHUS QUIZ

TRY THE CHRISTMaHUS QUIZ

  • Post author:ahusalliance
  • Post published:December 12, 2017
  • Post category:Featured
  • Post comments:0 Comments

It is 12 days to  Christmas and soon more time will  become available to relax and unwind, so why not do…

Continue ReadingTRY THE CHRISTMaHUS QUIZ
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