Where and what next?
Article No. 297 15 November 2019 There is a saying in “management theory” that in the development of a…
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.
Third Stop Bergamo Italy and another aHUS Expert Centre
Bergamo IT - Whistle-Stop Tour of 4 aHUS Centers in the EU: Visits to Three Nations in 6 days. The aHUS Alliance toured centers of aHUS expertise and research in July 2018. 3rd Stop: Mario Negri Institute, the Centro di Ricerche Cliniche per le Malattie Rare "Aldo e Cele Daccò"
A whistle stop tour of aHUS Expert Centres
Whistle-Stop Tour of 4 aHUS Centers in the EU: Visits to Three Nations in 6 days. "What is a Centre of Excellence?" lacks clarity, and is a concern of patients, families, and advocates. On behalf of atypical HUS advocates, the aHUS Alliance toured EU centers of aHUS expertise and research in July 2018.
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…