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…
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…
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…
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: 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…
aHUS Day video- Thoughts for Doctors
The aHUS alliance has put out its aHUS Awareness Day video for 2017. 72 patients, or family members, from 18…
Patients as Partners
Patients are at the heart of healthcare. Patients are the recipients of medical care, and the participants in research and clinical…