Atypical HUS PROs: Patient Reported Outcomes
What are patient reported outcomes (PROS)? The aHUS Alliance Global Action team look at PROs and their importance in the aHUS space.
What are patient reported outcomes (PROS)? The aHUS Alliance Global Action team look at PROs and their importance in the aHUS space.
The 7th annual aHUS Awareness Day will be marked on 24 September 2021. Created by the aHUS Alliance in 2015 to raise awareness about this life-threatening rare disease, the theme for this year's aHUS Day is 'United in Advocacy'. Details the 2021 global campaign to raising awareness of atypical HUS.
Harnessing the power of Nephrology Social Media - the aHUS Alliance looks back at KidneyWeek 2020 and its ability to inform & engage patient groups as well as medical professionals. How might Patient Experiences become better integrated to improve outreach and understanding for all stakeholders and initiatives?
Learning that you or a loved one have been diagnosed with a rare disease like atypical HUS is devastating. Imagine the…
One mother’s personal story about her young son’s diagnosis with atypical HUS. Connected to the broader themes of what happens after a rare disease diagnosis as working parents strive to navigate, childcare, emotional stress, and family impacts.
The Last in the aHUS Alliance Four Part Series Patients Included: Reality or Unmet Goal? 4 MYTHS of Rare…