More countries becoming neighbours in Global aHUS Town
Hiding in plain sight were neighbours Republic of Ireland and Iceland. The south of Ireland is well known as the place…
Welcoming another country to the “Global aHUS Town”
In the ever-evolving world of rare disease advocacy, each milestone marks not just progress, but hope. Today, hope takes on a…
Global aHUS Neighbours – Nepal moves in to aHUS Town.
Visitors to the aHUS alliance Global Action website may have observed a new feature on our home page. Yes a world…
India had its first aHUS patient conference- what next
India has had its first patient conference. A summary of what was covered has been posted on line and reposted below.…
Is this the beginning of the end of an aHUS journey in India?
Frequently these days people talk about their "journey". I have known of the journey of an aHUS patient in India for…
Advocacy for aHUS and “aHUSs”
When it comes to advocacy why say there is aHUS and there is also aHUSs? The rare disease aHUS is described…
E-sources for aHUS information and support
aHUS is a rare disease and rare disease patients are said to suffer from lack of awareness of their disease and…
Percentages and probabilities -AHUS AND MATH(S)
A frequent discussion on aHUS social media platforms is about "probabilities" and "percentages". The probabilities of someone inheriting an aHUS predisposing…
Is there a PDA for aHUS treatment continuation?
A PDA or patient decision aid is becoming an important part of the increasing shared decision making by patients and doctors.…
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