aHUS Global Action – Meet Trustee K Grey
As advocates for the rare disease atypical haemolytic uraemic syndrome (atypical HUS), there’s only one group of patients and caregivers whose…
aHUS website refreshed
Article No. 456 From today the aHUS alliance Global Action website has a new look. Just over five years since it…
Update: aHUS Diagnosis Process Study
Article No. 421 1 March 2021 There is no doubt that with the response by the aHUS Patient community to the…
Ravulizumab costs less over a life time
Article No 394 23 November 2020 In an article on 16 October 2020 (No 388) aHUS Global Action derived a cost…
Challenges for the new aHUS year- “Bring it on”
Another year has ended for those affected by aHUS. For some sadly it would have proven to have been their last.…
aHUS and TMA Study Centers
aHUS and TMA Study Centers An International List Compiled by the aHUS Alliance Atypical HUS is difficult…
The Many Faces of Atypical HUS: Rare Disease Day 2018
What happens after the world annually marks Rare Disease Day on the last day of February? We carry on…
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…
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…