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Rare Disease Day

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Read more about the article aHUS project for Rare Disease Day 2020

aHUS project for Rare Disease Day 2020

  • Post author:ahusalliance
  • Post published:January 2, 2020
  • Post category:Featured
  • Post comments:0 Comments

Atypical HUS: 2020 Rare Disease Day project by the aHUS Alliance. What do aHUS patients & family caregivers ‘see’ as needs for improvement or envision as future advancements for aHUS through 2020?

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Read more about the article Rare Disease Day:  Atypical HUS in 2020

Rare Disease Day:  Atypical HUS in 2020

  • Post author:ahusalliance
  • Post published:December 7, 2019
  • Post category:Uncategorized
  • Post comments:0 Comments

Article No. 302 7 December 2019     Rare Disease Day Looking Ahead:  What Atypical HUS Community Sees for 2020  …

Continue ReadingRare Disease Day:  Atypical HUS in 2020
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 The Zen of Living with a Rare Disease

The Zen of Living with a Rare Disease

  • Post author:ahusalliance
  • Post published:January 9, 2019
  • Post category:Featured
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The Zen of Living with a Rare Disease: a 4 step approach

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Read more about the article Rare Disease Day 2019:  Atypical HUS

Rare Disease Day 2019: Atypical HUS

  • Post author:ahusalliance
  • Post published:January 3, 2019
  • Post category:Featured
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Rare Disease Day 2019: Atypical HUS

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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 They do not get it , or do they?

They do not get it , or do they?

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

Everyone gets ill at some time don't they? Whether it is for example  a cold, stomach upset or measles, people know…

Continue ReadingThey do not get it , or do they?
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…

Continue ReadingAtypical HUS – Rare Disease Day 2018
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