Call to action USA aHUS Patients
In Article 462 notice was given of a study to help USA rare disease patients in general. and aHUS patients in…
USA aHUS – treatment costs study
Access to treatment for aHUS is a global issue. Many patients find themselves in countries where their health providers will not…
Pregnancy and aHUS
The topic of pregnancy and aHUS is included in the Global aHUS Patients’ Research Agenda. It has featured in articles on…
aHUS Patient Registries Iran & ERKNet
There have been several articles about aHUS Patient Registries on this website over the years. Patient Registries are an important part…
aHUS Diagnosis Process-First Report
The first report on what 227 aHUS patients from around the world told us about their aHUS diagnosis experience and their…
Tweet challenge for aHUS awareness
Research has shown that around 2 million tweets are made on Twitter each day. They are shared by around 600 thousand…
2021 FAQs – FACTS about Atypical HUS
aHUS Awareness Day 2021 - Answers to FAQs Finding information about any rare disease is challenging, and perhaps more so for…
Withdrawal – need for a consensus
Article No. 457 Yet another article about the outcome of withdrawal of eculizumab treatment has appeared. It is not about a…
aHUS website refreshed
Article No. 456 From today the aHUS alliance Global Action website has a new look. Just over five years since it…
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