The global poll of aHUS patients’ experience
Work began on the global poll of aHUS patients experiences of living with aHUS in early Autumn 2024. The Poll has…
It’s not about My Rare Disease
Support for rare disease patients and their families - what does that look like, and how does it address their needs? The aHUS Alliance looks behind the medical issues of living with a rare disease to focus on the many factors involved with the struggle to live a meaningful life centered on wellness.
Rare Disease Caregivers
Some countries use the term ‘carer’, while other nations prefer the word ‘caregiver’ to describe those individuals who fill the…