Lessons about aHUS Patient Advocacy
In the past this website featured a series of blogs which covered the story of a patient advocacy organisation in the…
Advocacy punching above its aHUS weight
There is so much chat these days about what things should be like after the pandemic. Though it does seem at…
Help needed to join the aHUS dots
Article No 395 25 November 2020 This was a call to action to the Global aHUS community.( Results to come) It…
Global aHUS advocacy
Article No 353 27 June 2020 Participants in the creation of a Global aHUS Patients’ Vision advocated that treatment of aHUS…
Voicing a Global aHUS Vision
Прекрасным будет тот день, когда наше осознание серьёзности заболевания аГУС/кТМА* поможет добиться того, что пациенты во всем мире смогут позволить себе…
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…
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…