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Read more about the article Jackie’s aHUS Experience: Rescue by Safety Card

Jackie’s aHUS Experience: Rescue by Safety Card

  • Post author:Linda Burke
  • Post published:May 24, 2024
  • Post category:Featured
  • Post comments:0 Comments

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Read more about the article Vision for a 2024 aHUS Global Poll

Vision for a 2024 aHUS Global Poll

  • Post author:Linda Burke
  • Post published:April 26, 2024
  • Post category:Featured
  • Post comments:0 Comments

A poll for the int'l atypical HUS community will launch in 2024, what does advocates envision for key info & comparisons?

Continue ReadingVision for a 2024 aHUS Global Poll
Read more about the article Learn with USTMA – aHUS Videos

Learn with USTMA – aHUS Videos

  • Post author:Linda Burke
  • Post published:December 15, 2023
  • Post category:Featured
  • Post comments:0 Comments

The United States Thrombotic Microangiopathy (USTMA) Consortium was formed in 2014 as a collaborative initiative to organize research efforts in the…

Continue ReadingLearn with USTMA – aHUS Videos
Read more about the article Atypical HUS PROs: Patient Reported Outcomes

Atypical HUS PROs: Patient Reported Outcomes

  • Post author:Linda Burke
  • Post published:March 18, 2022
  • Post category:Featured
  • Post comments:0 Comments

What are patient reported outcomes (PROS)? The aHUS Alliance Global Action team look at PROs and their importance in the aHUS space.

Continue ReadingAtypical HUS PROs: Patient Reported Outcomes
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 aHUS Day 2021 – Global Atypical HUS Project

aHUS Day 2021 – Global Atypical HUS Project

  • Post author:Linda Burke
  • Post published:July 24, 2021
  • Post category:Featured
  • Post comments:0 Comments

24 Sept 2021 will mark the 7th aHUS Awareness Day. Learn more about the 2021 aHUS day project to showcase global patient experiences.

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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…

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Read more about the article aHUS Day 2020:  Global Video Project

aHUS Day 2020: Global Video Project

  • Post author:ahusalliance
  • Post published:August 8, 2020
  • Post category:Featured
  • Post comments:0 Comments

Article No. 367 8 August 2020 aHUS Awareness Day 2020 is less than 2 months away! The world will join together…

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Read more about the article Finding a New Normal after Diagnosis

Finding a New Normal after Diagnosis

  • Post author:ahusalliance
  • Post published:January 31, 2019
  • Post category:Featured
  • Post comments:0 Comments

One mother’s personal story about her young son’s diagnosis with atypical HUS. Connected to the broader themes of what happens after a rare disease diagnosis as working parents strive to navigate, childcare, emotional stress, and family impacts.

Continue ReadingFinding a New Normal after Diagnosis
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