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Read more about the article Is this the beginning of the end of an aHUS journey in India?

Is this the beginning of the end of an aHUS journey in India?

  • Post author:Len Woodward
  • Post published:June 28, 2025
  • Post category:News
  • Post comments:0 Comments

Frequently these days people talk about their "journey". I have known of the journey of an aHUS patient in India for…

Continue ReadingIs this the beginning of the end of an aHUS journey in India?
Read more about the article Advocacy for aHUS and “aHUSs”

Advocacy for aHUS and “aHUSs”

  • Post author:Len Woodward
  • Post published:June 19, 2025
  • Post category:Featured
  • Post comments:0 Comments

When it comes to advocacy why say there is aHUS and there is also aHUSs? The rare disease aHUS is described…

Continue ReadingAdvocacy for aHUS and “aHUSs”
Read more about the article Mastermind on aHUS

Mastermind on aHUS

  • Post author:Len Woodward
  • Post published:June 13, 2025
  • Post category:Featured
  • Post comments:0 Comments

Imagine atypical haemolytic uraemic syndrome or aHUS on a well know quiz show, say Mastermind. How would it look?--- The Mastermind…

Continue ReadingMastermind on aHUS
Read more about the article Pregnancy Associated TMA: a Start to Nomenclature Revision

Pregnancy Associated TMA: a Start to Nomenclature Revision

  • Post author:Linda Burke
  • Post published:June 2, 2025
  • Post category:Featured
  • Post comments:0 Comments

It’s amazing how quickly medicine advances. For patients with some diagnoses, it seems like aspects such as new treatments or ‘standard…

Continue ReadingPregnancy Associated TMA: a Start to Nomenclature Revision
Read more about the article E-sources for aHUS information and support

E-sources for aHUS information and support

  • Post author:Len Woodward
  • Post published:May 23, 2025
  • Post category:Featured
  • Post comments:0 Comments

aHUS is a rare disease and rare disease patients are said to suffer from lack of awareness of their disease and…

Continue ReadingE-sources for aHUS information and support
Read more about the article Percentages and probabilities -AHUS AND MATH(S)

Percentages and probabilities -AHUS AND MATH(S)

  • Post author:Len Woodward
  • Post published:May 15, 2025
  • Post category:Featured
  • Post comments:0 Comments

A frequent discussion on aHUS social media platforms is about "probabilities" and "percentages". The probabilities of someone inheriting an aHUS predisposing…

Continue ReadingPercentages and probabilities -AHUS AND MATH(S)
Read more about the article New Canadian Expert Center for Complement-Mediated Rare Diseases

New Canadian Expert Center for Complement-Mediated Rare Diseases

  • Post author:Linda Burke
  • Post published:May 12, 2025
  • Post category:Featured
  • Post comments:0 Comments

Launch of a Canadian Expert Center for Complement-Mediated Rare Diseases  (CHU Sainte-Justine Centre d'expertise sur les maladies rares médiées par le…

Continue ReadingNew Canadian Expert Center for Complement-Mediated Rare Diseases
Read more about the article Is there a PDA for aHUS treatment continuation?

Is there a PDA for aHUS treatment continuation?

  • Post author:Len Woodward
  • Post published:May 7, 2025
  • Post category:Featured
  • Post comments:0 Comments

A PDA or patient decision aid is becoming an important part of the increasing shared decision making by patients and doctors.…

Continue ReadingIs there a PDA for aHUS treatment continuation?
Read more about the article Registries for the rare disease aHUS

Registries for the rare disease aHUS

  • Post author:Len Woodward
  • Post published:May 1, 2025
  • Post category:Featured
  • Post comments:0 Comments

Global Action has more than any other organisation promoted the research registries that exist for our rare disease. Many rare diseases…

Continue ReadingRegistries for the rare disease aHUS
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