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rare disease

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Read more about the article aHUS adverse events and patient reported outcomes

aHUS adverse events and patient reported outcomes

  • Post author:Len Woodward
  • Post published:November 29, 2022
  • Post category:Uncategorized
  • Post comments:0 Comments

aHUS patients in clinical trials are monitored for adverse events and personal outcomes experience while on treatment. Adverse events have been…

Continue ReadingaHUS adverse events and patient reported outcomes
Read more about the article Kamal is an aHUS Super Hero

Kamal is an aHUS Super Hero

  • Post author:Len Woodward
  • Post published:November 27, 2022
  • Post category:Uncategorized
  • Post comments:0 Comments

Kamal Shah is a Director/Trustee of aHUS alliance Global Action. He first had aHUS over 25 years ago. It was triggered…

Continue ReadingKamal is an aHUS Super Hero
Read more about the article “De Novo” aHUS is bad luck
NEW ZEALAND

“De Novo” aHUS is bad luck

  • Post author:Len Woodward
  • Post published:October 22, 2022
  • Post category:Uncategorized
  • Post comments:0 Comments

It has been known for decades that what is called " de novo " aHUS can happen to a kidney donor…

Continue Reading“De Novo” aHUS is bad luck
Read more about the article A Community Advisory Board for aHUS

A Community Advisory Board for aHUS

  • Post author:Len Woodward
  • Post published:June 12, 2022
  • Post category:News
  • Post comments:0 Comments

Today it can be announced that a Global aHUS Community Advisory Board (CAB) has been formed. What is a Community Advisory…

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Read more about the article An aHUS diagnosis, lucky or what?

An aHUS diagnosis, lucky or what?

  • Post author:Len Woodward
  • Post published:June 10, 2022
  • Post category:News
  • Post comments:0 Comments

It is hard to believe that it will soon be two years since the aHUS Diagnosis Process project began. It began…

Continue ReadingAn aHUS diagnosis, lucky or what?
Read more about the article Future effects of aHUS and its treatment

Future effects of aHUS and its treatment

  • Post author:Len Woodward
  • Post published:May 11, 2022
  • Post category:Featured
  • Post comments:0 Comments

A number of questions in the RDD2022 video are about what will happen to patients in the future due to the…

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Read more about the article Screening for aHUS at birth

Screening for aHUS at birth

  • Post author:Len Woodward
  • Post published:April 19, 2022
  • Post category:News
  • Post comments:0 Comments

Most babies are born healthy. Even those susceptible to aHUS due to genetic abnormalities are born healthy. Although it is rare,…

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Read more about the article Incomplete aHUS penetrance in families

Incomplete aHUS penetrance in families

  • Post author:Len Woodward
  • Post published:April 6, 2022
  • Post category:Featured
  • Post comments:0 Comments

Although aHUS has genetic causes, in the majority of cases it is found that the patient is the only one in…

Continue ReadingIncomplete aHUS penetrance in families
Read more about the article Long term aHUS effects

Long term aHUS effects

  • Post author:Len Woodward
  • Post published:March 16, 2022
  • Post category:Featured
  • Post comments:0 Comments

Long term aHUS disease, diagnosis and treatment legacies on both physical and mental health have featured in two aHUS Patient Research…

Continue ReadingLong term aHUS effects
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