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…
Patients Included: Reality or Unmet Goal? (#4: MYTHS of Rare Disease Advocacy)
The Last in the aHUS Alliance Four Part Series Patients Included: Reality or Unmet Goal? 4 MYTHS of Rare…
Does the aHUS alliance add value?
Adding value in patient advocacy is obvious. Or is it? Those involved in patient advocacy constantly ask themselves “Am I achieving…
4 MYTHS of Rare Disease Advocacy
The FIRST Article in a Four Part Series Rare Disease Advocacy: Digging deeper into…
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…
aHUS & C3G: KDIGO Physician Reference Guide (Oct 2017)
Among rare kidney diseases, there are common clinical and patient issues. Meeting at the KDIGO Controversies Conference Common Elements in…
Thinking More About aHUS Today.
So aHUS is a genetic disease caused by the aHUS gene. Many people talk about "the aHUS gene" as though it…
aHUS in ROMANIA – An Interview with Dr. Adrian Lungu
The aHUS Alliance is pleased to spotlight aHUS Romania (SHUa Romania) in this interview with Dr. Adrian Lungu, a…
Videos about aHUS which make you think differently
Last month the aHUS alliance in partnership with Andrew Siedlecki , the USA National Coordinator for the aHUS Registry and other…