The Reluctant Advocate Series: An international Twist. In the 8th of this series, Len Woodward explains and describes how he became an aHUS advocate and where the journey has taken him. Len Woodward was a founding Trustee of aHUSUK and a founding affiliate of the aHUS alliance. He is also a Director Trustee of aHUS alliance Global Action.
Before continuing on the U.K. front there had been an international development worth a mention which would transform aHUS advocacy not only in the UK but internationally, for all aHUS patients and organizations around the world.
aHUSUK had fulfilled an invitation from AIRG France to attend the national aHUS Patients Conference two days after the AGNSS meeting on 16 June 2012 .Although not as comprehensive as was to be the case in future when reporting about conferences I attended, I wrote briefly on the RareConnect website about the experience:
“I would like to say thank you for my daughter and I. We too attended the 2nd Conference on aHUS in Paris.
Professor Hubert Nivet, who made clear issues ( about Complement ) with his clever analogies and humour, Dr Veronique Fremeaux -Baachi whose enthusiasm and passion for understanding aHUS through research shone though, and Professor Chantal Loire’s authoritative knowledge on matters aHUS is plainly evident. So were the other professors and doctors who talked about the treatment of children and adults, as well as the successes of transplants supported by eculizumab. All added to what is a positive and hopeful future for aHUS patients in France and indeed everywhere.
We shall therefore have the same questions, issues, concerns and stoicism in living with aHUS.
Thanks to Daniel (Renault) and Nicolas (Mullier) for organizing a worthwhile and successful conference at this impressive venue that is the Hopital European Georges Pompidou.”
Little did we know it but the aHUS patient organisation representatives who attended the meeting from France, Belgium and Spain as well as the U.K. began to talk about collaborating between countries. A momentum then began building in the social media about some form of international group, culminating in the first meeting of the aHUS alliance in Barcelona eight months later.
A couple of weeks after the AGNSS announcement the first meeting was held of what was intended to be the Alliance SHUa European a sub group of the fledgling organisation FEDERG. By then aHUS organisations from Italy and Russia had been added to its number.
The meeting took place in a hotel ( America!) in Barcelona . After introducing each other, our organisations and what the status of aHUS was in our countries at that time a debate took place on what kind of activities could be done better together and whether a European organisation should be formed to do them. Those attending said that such an organisation , a loose affiliation ( I.e. not a formal legal entity) should be formed (later amended) , and it should not be confined to Europe and that it should be called the aHUS alliance. The group was to be associated with Rare Connect, whose representative also attended the meeting ( a EURORDIS project) and whose on line platform would be used for communication as no alliance website was intended to be constructed. It was on Rare Connect that the formation of the aHUS alliance was announced on 28 February 2013 – Rare Disease Day.
But could good come from being together?
a copy of the notes of the first meeting can be seen here
