Aspirations for aHUS- a to do list.
You know how when a group forms and they create ideas of what the group can do together - they have…
*Cancelled* Global aHUS “Town Hall” Meetings – Awareness Day 2022
Breaking news Breaking News Breaking News Due to unforeseen events the planned Town Hall meetings on aHUS awareness are cancelled. Sorry…
2021 FAQs – FACTS about Atypical HUS
aHUS Awareness Day 2021 - Answers to FAQs Finding information about any rare disease is challenging, and perhaps more so for…
Challenges for the new aHUS year- “Bring it on”
Another year has ended for those affected by aHUS. For some sadly it would have proven to have been their last.…
Good will come together?
Some key issues exist for atypical HUS patient groups regardless of national borders, which launched the aHUS Alliance on 2013 Rare Disease Day, 28 February. How momentum among nations impacted aHUSUK recognition that atypical HUS advocacy collaboration brings new focus: good will come together.
aHUS and TMA Study Centers
aHUS and TMA Study Centers An International List Compiled by the aHUS Alliance Atypical HUS is difficult…
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…