More from the Reluctant Advocate.
International collaboration was beginning to pick up considerably after the 2015 London meeting of affiliates.
At its first meeting in Barcelona the aHUS alliance agreed that its communications would be made on the Rare Connect platform provided by EURORDIS.
And that is what it did.
At its meeting in Paris the alliance decided to move into the social media ,Facebook and Twitter, to raise its profile further. In the time between that meeting and its next meeting in London one affiliate created a website which comprised a few pages with some photographs taken at the Paris meeting.
In London it was decided to explore the possibility of creating the alliance’s own website. It was too late for it to help with the first aHUS Awareness Day but a task group , including myself, was set up to work on a design and a plan for funding and implementation of an alliance website.
A domain was bought, the original URL was not allowed to be used, and an interim website structure was set up to be available for hosting the 2016 Global Poll on Rare Disease Day 2016.
Meanwhile behind the scenes the development work continued. Alliance affiliates were involved throughout and asked for ideas for content ( a Skype group had been set up to allow discussion and decisions).
The final alliance website:
was ready to go public at the end of May so that the results of the Global aHUS Poll could be announced.
That was it , the alliance had its own place to connect, inform and collaborate.
It just needed the aHUS community to know about it and that would take time. Certainly at that time an “aHUS” search term would not bring the website to the first page of Google search engine results.
That would take a long time, but then it had been a joyous moment when the alliance website appeared on page 50 of Google results!
Bit by bit the alliance website moved up the search results. As more and more content was written which seemed to attract more and interest.
As with the aHUSUK website I found plenty of material to write about but this time I was not alone as others joined in to give anyone interested a better mix of interesting aHUS subject matter.
For me it was just another collaboration. After all the alliance only exists when there is collaboration.
A compilation of the Reluctant Advocate blogs is being completed with more content and will be available in the alliance’s Info Centre soon.