aHUS Connection Information Collaboration

Although there may be a few earlier dates for posts written as we were experimenting in using the website, the official launch of this website was three years ago on 28 May 2016.

These things are not easy to do and work on the website had begun in earnest over six months earlier. In fact it had been almost a year since the alliance decided to have a website at its meeting in London in June 2015. This was a website made by aHUS patients /carers not highly paid media consultants.

But did it we did.

From the outset its aim was to be a place where the alliance would Connect Inform and Collaborate with anyone in the Global aHUS community for the benefit of aHUS patients.

And that is what we have done.

We could not afford a language translation application though affiliated alliance organisations could offer a range of language skills and articles have been written in French, Spanish, Polish and Japanese. It would be multi media too.

We realise that not all the aHUS community know of us,and, some of those who do may choose not to join in. As we sometimes say aHUS is “bloody scary”, arguably more so when it is not understood. Some may not readily respect another patient or carer’s views about the disease, however experienced and knowledgeable, trusting only clinicians.That is normal. The alliance appreciates that connection cannot be taken for granted.

It is also hard in a time when information about aHUS is ubiquitous from so many sources. Reaching out to a large community globally involving many countries with different languages, variable access to the internet presents challenges to even start let alone keep a further opportunity open for those seeking answers.

That some may still then lament the lack of material about aHUS which is understandable to patients, is more down to their search limitations not the efforts by those who do try to provide some information

“Some information” because no source whether provided by Pharm, Health providers, professional and patient organisations can provide all information. It is the alliance’s vision that collectively a synergy emerges. Good will come together.

Those contributing to the alliance website have in mind a potential readership which is extremely diverse. So some contributions will inevitably strike a chord with only a small number of readers but others may resonate with lots of people. Both contributions are equally valid it is just that somethings matter to more people than others, but all matter. Our website is an “aHUS readers digest” so to speak. It is not static by any stretch of the imagination like some. It is easier to provide static information content for new viewers, than new information for repeat viewers.

Things change over time and it is important to refresh and reinvigorate but knowing about the past can give a sense of progress, and can also be surprising. But it needs also to be remembered that the past is where many aHUS patients in the world are still living today when it comes to health care provision for aHUS.

Information needs are not just about the clinical aspects of our disease,  it is much wider than that, the alliance is a patient organisation of patient organisations existing, or yet to emerge, who need help and also need to share.

It is also a matter of what is done with it.

It is also about how it is delivered and the website uses, or links to, other media like video.

Information which stimulates discussion helps develop understanding which in turn improves information.

Through the action of the alliance website  those affected by aHUS have created a Global Agenda which gives clear insights to what matters to them.

Through this website the momentum of aHUS Awareness Day builds year on year as more seek to rise above aHUS.

Those who contribute to the website do not know everything. How could they? No one does. But they are prepared to try to find out as much as they can about what they don’t know and lay out what they find for others to see.

In our fourth year the alliance website should see more contributions from more lay writers, as well as clinicians and researchers. Refreshing and reinvigorating.

Anyone wishing to collaborate with us in connecting and informing about any aHUS topic is welcome to contact us on info@ahusallianceaction.org to pitch their idea. Even if it helps just one person, and maybe not thousands ,it is worthwhile. It is the aHUS patient it is done for, all insights count.

Information is little use without connection and the best connection is followed by collaboration.

 

This was the news item which launched the website here.