People living with the rare disease atypical hemolytic uremic syndrome (atypical HUS or aHUS) face many challenges, including the difficulty in speaking with their healthcare professionals about symptoms…
Rare Disease Day 2018 had the theme of research. As its contribution to Rare Disease awareness this year , the aHUS alliance facilitated an aHUS awareness video ,which in its…
What does the term ‘rare disease advocacy’ mean to you? Patients and caregivers speaking up on social media or at various meetings, addressing needs for a particular rare…
Adding value in patient advocacy is obvious. Or is it? Those involved in patient advocacy constantly ask themselves “Am I achieving anything?” . They know they are doing things, but…
It is 12 days to Christmas and soon more time will become available to relax and unwind, so why not do the opposite and take the ChristmaHUS Quiz challenge ?…
Rare Disease Day will be marked around the world on 28 February 2018 and the aHUS Alliance is pleased to announce a global project to raise awareness about the rare…
Once again, the American Society of Nephrology’s (ASN) Kidney Week adds considerably to the knowledge of kidney disease in all its facets During Kidney Week, this year held in New…
It can be a struggle to find information about medical conditions if you’ve been diagnosed with a rare disease, and more so if you have multiple medical issues which…