AHUS alliance four years on from Barcelona

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”.

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