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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
Read more about the article Atypical HUS – Rare Disease Day 2018

Atypical HUS – Rare Disease Day 2018

  • Post author:ahusalliance
  • Post published:December 1, 2017
  • Post category:Featured
  • Post comments:0 Comments

Rare Disease Day will be marked around the world on 28 February 2018 and the aHUS Alliance is pleased to announce…

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Read more about the article What happens in British Columbia does not stay in British Columbia

What happens in British Columbia does not stay in British Columbia

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

The recent incident in British Columbia about access to eculizumab, which was referred to in a recent blog ( click here)…

Continue ReadingWhat happens in British Columbia does not stay in British Columbia
Read more about the article The aHUS Registry Explained (Part 1)

The aHUS Registry Explained (Part 1)

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

From its beginning the aHUS alliance’s website has featured articles about the aHUS Registry and the work it does (click here…

Continue ReadingThe aHUS Registry Explained (Part 1)
Read more about the article An Interim aHUS Patients Research Agenda

An Interim aHUS Patients Research Agenda

  • Post author:ahusalliance
  • Post published:November 21, 2017
  • Post category:Featured
  • Post comments:0 Comments

It is a year since an Orphanet Journal of Rare Disease article was published about a patients  aHUS research agenda and…

Continue ReadingAn Interim aHUS Patients Research Agenda
Read more about the article 100 days to Rare Disease Day 2018

100 days to Rare Disease Day 2018

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

aHUS is rarer than rare In patient advocacy for rare diseases like aHUS there  seems to be a  background  cycle to…

Continue Reading100 days to Rare Disease Day 2018
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