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.…
Review of the aHUS patient research agenda (Part 1)
During December and January last, there has been a review of each of the 15 topics in the patients research agenda.…
Mental health – aHUS Agenda Topic 12
Mental health is an extensive issue of modern times focusing on depression and anxieties. The inverse of depression is self-esteem how…
Complement inhibitor users it’s World Meningitis Day
It is important that those using complement inhibitors remain alert to meningococcal infection a life threatening side effect of their use.…
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…
aHUS alliance video for aHUS Awareness Day 2016
Use the following link to see the work of aHUS patients, parents and carers from 17 countries around the world on…
Social Media and aHUS
No one can describe the aHUS journey better than atypical HUS patients and their caregivers, and who better to globally frame…
aHUS Voice in 2016
2016 aHUS Global Poll - Results aHUS Patient Global Voice In a multi-national collaboration of aHUS patient organizations around the world,…