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…
aHUS Trials Watch 4
Some news about trials affecting those with aHUS; but at two ends of the clinical research spectrum. The first is about…
Transplant and aHUS Risks
The aHUS Alliance was invited by the aHUS Registry Scientific Board to say what matters most to patients in aHUS research.…
aHUS Patients have a value beyond the balance sheet
It was little known, but Alexion decided years ago that it would reinvest 40% of any of its profits from the…
They do not get it , or do they?
Everyone gets ill at some time don't they? Whether it is for example a cold, stomach upset or measles, people know…
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…
aHUS Group Expectations for 2018 (continued)
Following aHUS India's response came two replies from The Netherlands and UK in Europe. Their expectations reflect a very different position…
aHUS Patient Group Expectations of 2018- India
The alliance has asked all the affiliated aHUS organisations and groups to provide their thoughts on what they expect to happen…
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