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…
What does the term ‘rare disease advocacy’ mean to you? Patients and caregivers speaking up on social media or…
The Last in the aHUS Alliance Four Part Series Patients Included: Reality or Unmet Goal? 4 MYTHS of Rare…
4 MYTHS of Rare Disease Advocacy: Digging deeper into Common Misperceptions Pathways of Patient Engagement & Recruitment…
So aHUS is a genetic disease caused by the aHUS gene. Many people talk about "the aHUS gene" as though it…
Last month the aHUS alliance in partnership with Andrew Siedlecki , the USA National Coordinator for the aHUS Registry and other…
Patients both desire and need to be involved at every level of their healthcare. Within the last decade there’s…