Creating Your Advocacy Footprint in the Rare Disease Arena
What does the term ‘rare disease advocacy’ mean to you? Patients and caregivers speaking up on social media or…
They do not get it , or do they?
Everyone gets ill at some time don't they? Whether it is for example a cold, stomach upset or measles, people know…
Pathways of Patient Engagement – 4 Myths of Rare Disease Advocacy: Part 3
4 MYTHS of Rare Disease Advocacy: Digging deeper into Common Misperceptions Pathways of Patient Engagement & Recruitment…
4 Myths of Rare Disease Advocacy: Part 2
The SECOND Article in a Four Part Series Rare Disease Advocacy: Digging deeper into Common Misperceptions Although there…
4 MYTHS of Rare Disease Advocacy
The FIRST Article in a Four Part Series Rare Disease Advocacy: Digging deeper into…
Atypical HUS – Rare Disease Day 2018
Rare Disease Day will be marked around the world on 28 February 2018 and the aHUS Alliance is pleased to announce…
100 days to Rare Disease Day 2018
aHUS is rarer than rare In patient advocacy for rare diseases like aHUS there seems to be a background cycle to…
aHUS “How To” – Find Atypical HUS Research
It can be a struggle to find information about medical conditions if you’ve been diagnosed with a rare disease, and…
Atypical HUS Facts – 2017 aHUS Alliance Fact Sheets
Looking for the latest 2017 facts and key research about the rare disease atypical hemolytic uremic syndrome (aHUS)? You’ve found…