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rare disease

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Read more about the article Atypical HUS Facts – 2017 aHUS Alliance Fact Sheets

Atypical HUS Facts – 2017 aHUS Alliance Fact Sheets

  • Post author:ahusalliance
  • Post published:October 9, 2017
  • Post category:Featured
  • Post comments:0 Comments

  Looking for the latest 2017 facts and key research about the rare disease atypical hemolytic uremic syndrome (aHUS)?  You’ve found…

Continue ReadingAtypical HUS Facts – 2017 aHUS Alliance Fact Sheets
Read more about the article aHUS in Poland – United in Advocacy

aHUS in Poland – United in Advocacy

  • Post author:ahusalliance
  • Post published:September 7, 2017
  • Post category:Featured/Uncategorized
  • Post comments:0 Comments

    We welcome the aHUS community in Poland as the newest of aHUS patient organizations uniting with other nations under…

Continue ReadingaHUS in Poland – United in Advocacy
Read more about the article Patients as Partners

Patients as Partners

  • Post author:ahusalliance
  • Post published:August 5, 2017
  • Post category:Featured
  • Post comments:0 Comments

Patients are at the heart of healthcare.  Patients are the recipients of medical care, and the participants in research and clinical…

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Read more about the article How Do You Define Wellness if You’re Living with a Rare Disease or Chronic Illness?

How Do You Define Wellness if You’re Living with a Rare Disease or Chronic Illness?

  • Post author:ahusalliance
  • Post published:July 2, 2017
  • Post category:Uncategorized
  • Post comments:0 Comments

    What does the term ‘wellness’ mean if you’re a patient with a very rare disease or chronic illness?  At…

Continue ReadingHow Do You Define Wellness if You’re Living with a Rare Disease or Chronic Illness?
Read more about the article Health IT in the Exam Room

Health IT in the Exam Room

  • Post author:ahusalliance
  • Post published:June 9, 2017
  • Post category:Featured
  • Post comments:0 Comments

A doctor’s waiting area and exam rooms today look much like they appeared in the 1950s.  Patients used to sit in…

Continue ReadingHealth IT in the Exam Room
Read more about the article aHUS alliance website one year on

aHUS alliance website one year on

  • Post author:ahusalliance
  • Post published:May 28, 2017
  • Post category:Featured
  • Post comments:0 Comments

The aHUS alliance website  has reached its first anniversary. Although some of the first blogs have dates preceding 28 May 2016…

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Read more about the article Genetic tests – to know or not?

Genetic tests – to know or not?

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

Genetics is very important to aHUS patients. aHUS is a very rare genetic diseases. aHUS patients get to know and understand…

Continue ReadingGenetic tests – to know or not?
Read more about the article Parents Want to Know about aHUS Childrens’ Issues

Parents Want to Know about aHUS Childrens’ Issues

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

Exploring your Questions, Rare Disease Day 2017 Children living with the rare disease atypical HUS are first and foremost children.  Despite…

Continue ReadingParents Want to Know about aHUS Childrens’ Issues
Read more about the article Vision Issues & aHUS

Vision Issues & aHUS

  • Post author:ahusalliance
  • Post published:March 8, 2017
  • Post category:Featured
  • Post comments:0 Comments

  It’s difficult for rare disease patients to find information about their condition and even more so for patients with medical…

Continue ReadingVision Issues & aHUS
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