On 16 February 2013 representatives from six European aHUS patient organisations met in Barcelona and decided to create an aHUS alliance
Seated ( from left) Francisco Montfort , Poulo Chiandrotti, Anne Sophie Turenhoudt ;Standing: Len Woodward, Anastasiya Tatarnikova, Stefano Sala ,Mireya Carratala ,Nicolas Mullier, Nadege Mullier ( partially hidden) , Kath Woodward.
Four years on, the enlarged global organisation continues to do things together to meet the challenges facing those affected by aHUS.
In that time the alliance has collaborated on:
- hosting two Global Polls of aHUS patients and their carers
- facilitating two global International aHUS Awareness Days
- holding two alliance conferences
- welcoming seven new affiliated organisations
- gaining representation on the global aHUS Registry
- a research publication
- connecting with international aHUS clinicians and researchers
- representation at the UN
- developing considerable social media connectivity
- creating a highly respected “go to” website for international aHUS news and information
The challenges for the alliance, and its affiliates continue to be as considerable as those aspirations it listed at the first meeting in Barcelona as “things best to work on together” .
There is no doubt too that GOOD WILL COME TOGETHER
Comment received about anniversary from A Smith “I’m glad that it turned out so effectively and I hope it will continue in the future because it is so worthwhile and meaningful to the community”.
