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Read more about the article aHUS as a rare disease 10 years ago

aHUS as a rare disease 10 years ago

  • Post author:Len Woodward
  • Post published:April 18, 2024
  • Post category:Featured
  • Post comments:0 Comments

10 years ago global information about aHUS patients was more or less non existent. Vey sparse at best. An aHUS alliance…

Continue ReadingaHUS as a rare disease 10 years ago
Read more about the article Is it OK to spend $2 billion plus on aHUS patients?

Is it OK to spend $2 billion plus on aHUS patients?

  • Post author:Len Woodward
  • Post published:April 17, 2024
  • Post category:Featured
  • Post comments:0 Comments

OK. Imagine yourself as an aHUS patient and advocate for other aHUS patients in your country and you have been asked…

Continue ReadingIs it OK to spend $2 billion plus on aHUS patients?
Read more about the article Ambitions for Rare Diseases are aHUS ambitions too

Ambitions for Rare Diseases are aHUS ambitions too

  • Post author:Len Woodward
  • Post published:April 8, 2024
  • Post category:Featured
  • Post comments:0 Comments

Below is a “framework of ambitions” for those with rare diseases which appeared on Rare Disease Day 2024 (see link below…

Continue ReadingAmbitions for Rare Diseases are aHUS ambitions too
Read more about the article Characteristics of aHUS patients

Characteristics of aHUS patients

  • Post author:Len Woodward
  • Post published:April 4, 2024
  • Post category:Featured
  • Post comments:0 Comments

Although sparse, getting characteristics information about aHUS patients can come from a variety of sources. A recent article in The Lancet*…

Continue ReadingCharacteristics of aHUS patients
Read more about the article Who to call aHUS -D59.32 or D59.39?

Who to call aHUS -D59.32 or D59.39?

  • Post author:Len Woodward
  • Post published:April 1, 2024
  • Post category:Featured
  • Post comments:0 Comments

Who are Alois Alzheimer, Cecil Alport, Burrill Crohn, Guillaume Duchenne, James Parkinson and Graham Hughes and what do they have in…

Continue ReadingWho to call aHUS -D59.32 or D59.39?
Read more about the article Newsletter: aHUS Global Advocate, 9th Edition

Newsletter: aHUS Global Advocate, 9th Edition

  • Post author:Linda Burke
  • Post published:April 1, 2024
  • Post category:News
  • Post comments:0 Comments

The aHUS Global Advocate Newsletter, highlights of news & views with a focus on the rare disease atypical HUS. Our 9th Edition, March 2024

Continue ReadingNewsletter: aHUS Global Advocate, 9th Edition
Read more about the article Bill and Cheryl Biermann -Before aHUS Endeavours Fade

Bill and Cheryl Biermann -Before aHUS Endeavours Fade

  • Post author:Len Woodward
  • Post published:March 25, 2024
  • Post category:Featured
  • Post comments:0 Comments

The aHUS endeavours series continue with an interview with Bill and Cheryl Biermann whose family was affected by aHUS at the…

Continue ReadingBill and Cheryl Biermann -Before aHUS Endeavours Fade
Read more about the article Aspirations for aHUS- a to do list.

Aspirations for aHUS- a to do list.

  • Post author:Len Woodward
  • Post published:March 20, 2024
  • Post category:Featured
  • Post comments:0 Comments

You know how when a group forms and they create ideas of what the group can do together - they have…

Continue ReadingAspirations for aHUS- a to do list.
Read more about the article Research into aHUS – an interview with a researcher

Research into aHUS – an interview with a researcher

  • Post author:Len Woodward
  • Post published:March 18, 2024
  • Post category:Featured
  • Post comments:0 Comments

Last year Global Action brought attention to a research article ( Closing the CaHUS knowledge gap ) which stood out as…

Continue ReadingResearch into aHUS – an interview with a researcher
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