aHUS Patient information and mutual support

One thing is for certain, there is much more information available about aHUS because of the internet than there was even 10 years ago. There are so many facets and dimensions to the aHUS subject and many different needs for the information. There are also many different websites coming at the subject from different angles. Sites run by Pharma , Clinicians, Patient Organisations of varying approaches, Some about genetics , disease rarity , renal disease , and complement .Some do it for money. Some do it as part of their job , some volunteer to do it .

I guess this a long way to telling you Pamela that there is “no one stop” resource. Before even thinking about which, of those that are out there, would be regarded as “good” .

All that can be said, in all modesty, is the website of aHUS alliance Global Action has an informal editorial policy to provide information to as many different parties interested in aHUS as we can envisage. on one platform. We have been doing so for six years this month. We try to keep it fresh in outlook. We are as likely to write about something which is of interest to only a handful of potential viewers e.g. an article about sepsis pneumoniae HUS, as others which are of generic interest and which may go beyond the aHUS community, about “brain fog” for example.

Pamela it seems your two interests are genetics and its testing as well as treatment delivery methods. A search around this website will show that Global Action has been as good as any source in bringing content for you to read. Sometimes we are only ones to make such content available and in a way which has helped to understand the topic we write about. When we write we are really talking about the subject to someone who has an interest and we recognise that some of the clinical science is hard to understand ( at least it is to us).

In the early days when there was a dearth of information anywhere about ravulizumab , Global Action was watching and reporting on the trials and when it became available undertook a series of “spotlight” articles, gleaning as much as we could find from the ravulizumab prescription leaflet we found. We take great care not to give medical advice in any subsequent articles. We are not medically qualified, but we would point people in a direction where they might find answers.

When we needed to know more about experiences of people on ravulizumab and about how transition from eculizumab to ravualizumab went , we conducted out own research* with input from the few patients who had such an experience. All done anonymously but with consent. And with a hope that we had pre-empted what questions viewers would want answering. That relationship between the site and its readers is important. Ecu/Ravu Experience*

We have featured articles about eculizumab dosage tapering in The Netherlands and Italy as well as the results of complete treatment withdrawal.

What does not work as well on websites is chatting with other site users. We introduced a comments feature when we renewed our website last year but it is not something that seems to appeal. The best chats in any case are at face to face meetings/conferences which people can attend. Hopefully once the pandemic abates more such meetings might reappear.

Article No 510