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…
In the ever-evolving world of rare disease advocacy, each milestone marks not just progress, but hope. Today, hope takes on a…
Visitors to the aHUS alliance Global Action website may have observed a new feature on our home page. Yes a world…
India has had its first patient conference. A summary of what was covered has been posted on line and reposted below.…
Frequently these days people talk about their "journey". I have known of the journey of an aHUS patient in India for…
When it comes to advocacy why say there is aHUS and there is also aHUSs? The rare disease aHUS is described…
aHUS is a rare disease and rare disease patients are said to suffer from lack of awareness of their disease and…
A frequent discussion on aHUS social media platforms is about "probabilities" and "percentages". The probabilities of someone inheriting an aHUS predisposing…
A PDA or patient decision aid is becoming an important part of the increasing shared decision making by patients and doctors.…
Global Action has more than any other organisation promoted the research registries that exist for our rare disease. Many rare diseases…