A big step in the Reluctant Advocate’s journey.
As previously pointed out aHUSUK outreach was extending due in the main to the links it was forming with other aHUS patient organisations. But in one week it went up a notch.
First of all ,as guests of the then “Foundation for children with atypical HUS” ,I attended its conference weekend in Iowa City. This included the biennial University of Iowa aHUS patient conference on Saturday 25th October 2014, as well as a number of other presentations and social events.
Almost in real time I wrote about it on the aHUSUK website and what I said can be seen at this link here.
It was an early example of my reporting on conferences for those who could not be there and as a record of what are really unique and historic events , often revealing how the paradigms of aHUS knowledge and patient advocacy were changing.
But what was clearly noticeable and insightful again was that aHUS patient’s concerns differ little where ever they live ,as I wrote:
“The early arrivals include grandparents of a young boy who became ill with aHUS in India just a few weeks ago and is recovering well having received eculizumab. The conversations around the room are typical of what happens when those who have encountered aHUS, whether early or later in life, meet up wherever they are in the world.”
With hindsight , my concluding comment “The Foundation have set the bar high for putting on an educational event for the aHUS community.” reveals that with the NICE evaluation of eculizumab more or less behind us that it might be time to have second UK aHUS Patients Conference.
Phyllis Talbot Linda Burke and I in Iowa
Outside of the conference I also established the Foundation’s affiliation to the aHUS alliance with its leaders at the time. The “Talbots” and the “Biermanns” , and of course the alliance’s biggest supporter, Linda Burke.
I believe all of them have a distinguished place as the early pioneers of aHUS Patient advocacy.
On a personal note , although I had been a frequent traveler to the USA before my daughter’s illness this had been my first visit back in 18 years. Eculizumab had given back freedoms that had been lost because of aHUS.
No sooner had I recovered from jet lag that I was off again to Paris. The aHUS alliance had been planning its second meeting of affiliates at the George Pompidou Hospital in Paris. This time more countries were participating, including some by teleconference from Canada Italy India and USA.
An idea of what was talked about can be gained from the notes of the meeting which can be seen on this website click here.
A collage of photographs taken during the meeting
Apart from the nations’ updates ,which were recorded, (but the video of them seems to be lost) two important decisions were made.
Firstly, affiliates agreed to hold an aHUS Awareness Day, and also , after presentations by Doctors Gema Ariceta of Spain and Veronique Fremeaux-Bacchi of France it was agreed that the alliance would accept an invitation ,which I had received earlier in the year, to partner in the Global aHUS Registry.
The meeting ended with the news that the next meeting of the alliance was now being planned for London in June 2015.
Having all signed the “certificate of attendance “and agreed to fight for aHUS patient group rights” a picture was taken of the group jumping for joy at the very recent news from NICE about its positive recommendation for eculizumab to treat English aHUS patients.
With that what had been a very busy year( 2014) coming to a close, 2015 would bring different challenges.