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.
24 Sept 2021 – aHUS Awareness Day
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.
Atypical HUS & #Nephrology #SoMe
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?
Atypical HUS: What are you Waiting for?
Learning that you or a loved one have been diagnosed with a rare disease like atypical HUS is devastating. Imagine the…
Finding a New Normal after Diagnosis
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.
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…