Patients as Partners
Patients are at the heart of healthcare. Patients are the recipients of medical care, and the participants in research…
How Do You Define Wellness if You’re Living with a Rare Disease or Chronic Illness?
What does the term ‘wellness’ mean if you’re a patient with a very rare disease or chronic illness? At…
Health IT in the Exam Room
A doctor’s waiting area and exam rooms today look much like they appeared in the 1950s. Patients used to sit in…
aHUS alliance website one year on
The aHUS alliance website has reached its first anniversary. Although some of the first blogs have dates preceding 28 May 2016…
Genetic tests – to know or not?
Genetics is very important to aHUS patients. aHUS is a very rare genetic diseases. aHUS patients get to know and understand…
Parents Want to Know about aHUS Childrens’ Issues
Exploring your Questions, Rare Disease Day 2017 Children living with the rare disease atypical HUS are first and foremost children. Despite…
Vision Issues & aHUS
It’s difficult for rare disease patients to find information about their condition and even more so for patients with medical…
Images for Rare Disease Day
Below are some aHUS Alliance images for Rare Disease Day, please visit our social media for a comprehensive array of current…
Rare Disease Caregivers
Some countries use the term ‘carer’, while other nations prefer the word ‘caregiver’ to describe those individuals who fill the…