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
The aHUS Alliance Global Action team has a gallery with a sampling of atypical HUS informational images for people and groups to share facts in their advocacy effort.
Info & Advocacy – an Image Gallery
Below are just some aHUS Alliance images created for Rare Disease Day, so please visit our social media on platforms such as Twitter/X @aHUSallianceAct for a comprehensive array of current graphics.
Rare Disease Caregivers
Some countries use the term ‘carer’, while other nations prefer the word ‘caregiver’ to describe those individuals who fill the…
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…