Broader picture of aHUS and greater outreach

As 2014 progressed it was noticeable how much aHUSUK had  become aware of other countries and their aHUS challenges and focuses.

From its formation in 2011 I had been posting news about the UK on the Foundation for Children with atypical HUS website. It had a wide international readership including many from the UK. It was interactive too, a sort of Facebook before Facebook took over.

The first thread about aHUS in the UK disappeared because the UK member resigned from the site . That thread had quickly attracted a lot of views and had been aHUSUK’s only way to get news  into the public domain until the aHUSUK website was launched. Or until a French member of the Foundation site had let me know about Rare Connect,

I began to contribute to both with increasing frequency on all manner of topics , including whether aHUS organisations around the world might benefit from working together.

Oddly during this time the Foundation which had focused on children began to see aHUS as an adult disease too ( strange how people’s encounter with aHUS drives their perception of aHUS, early advocates became so because of their children’s experience) and a thread was established and ,like the aHUS in the UK , thread quickly became popular and its views increased until they exceeded what had been the most popular thread about eculizumab.

That website is now dark. A decision taken by a new generation of aHUS advocates. In many ways the content of that website provided a history of early aHUS patient advocacy not just of the USA but around the world.

The call I made on that site for an organisation of aHUS patient organisations led ultimately to the meetings that created the aHUSalliance.

As Rare Disease Day 2019 approaches it is worth recalling what was said six years ago when the alliance was formally launched.

The Alliance is an organisation for aHUS Patient Organisations and is open to any national organisation which has been set up to represent younger and older aHUS patients, either specifically or as part of a wider related patient cohort.

Although the representatives of patient organisations who gathered in Barcelona on 16 February initially thought an alliance was needed within the newly emerging FEDERG organisation; it became evident that to limit its scope to European Union member countries was an unnecessary constraint when aHUS affected such small numbers of people throughout the world.

 

From the archives; the original aHUS alliance logo for the first meeting in multi languages and European in outlook

So although the Alliance will have a legal identity of its own as a Spanish Government approved organisation ( note: it did not happen) it will operate globally with national organisations joining in and collaborating as they wish. Solutions will be sought to resolve communication hurdles so that Alliance meetings can be as fully inclusive as is practical.

The RareConnect Community’s website (NORD and Eurordis) will be the main platform for communicating aHUS Alliance news and activities.

Whilst it is important to talk, collaborating on action will be the key principle underpinning the Alliance’s purpose. National organisations remain fundamental to the way aHUS patients are supported; but ,encouraged by an Alliance, that support can be enhanced through the development and understanding of national organisation representatives.

The Alliance will also provide a platform for greater collective links with clinicians , researchers ,and other professionals who along with patients themselves are resolved to overcome the challenges that aHUS presents.

On this Rare Disease Day 2013, aHUS Alliance is formally announced and begins its journey.”

Because of these connections by 2014 the aHUSUK website had articles about the campaign for access to eculizumab in Australia and Belgium.  aHUSUK had ,at the Australian patient organisation request, contributed to the public consultation there .

But 2014 was the year of the first major collaboration by aHUS patient organisations. Supported by Rareconnect  ,which had become the aHUS alliance’s chosen platform to promote its work, a group of advocates from Spain , USA and UK designed a global survey about aHUS.

Using the 6 key Rare Diseases issues ( Diagnosis, Treatment, Research & Registries , Information and Expert Centre access)  as its structure,  28 questions were “crafted”, it is not easy drafting a questionnaires to get consistency of answers from all respondents. It was translated into 6 languages.  The survey ,or Poll as it became known, was launched on Rare Disease  Day 2014.

Over 200 aHUS folk from 17 countries,  with at least 1 from each continent, responded. The results were compiled and a picture of aHUS people  by aHUS people  for aHUS people emerged for the first time. The characteristics of aHUS patients, as well as their varied experience of diagnosis treatment and research was there to see.  There was an insight into how those , who were affected by aHUS sought and found reliable information about aHUS.

Some data highlights was turned into a simple aHUS infographic by Rare Connect. A webinar was held with Professor Tim Goodship in which he commented on the results and gave some personal views on current and future research. A compendium of graphs was produced and I wrote an analysis report with key observations of what the graphs were showing.

Sadly the video has been lost to view when Rare Connect rejigged its website a year or so ago and links were destroyed in the process. Some bits remain on this Orphan Drug site here

The analysis I wrote can be seen here    aHUS Global Poll 2014

Looking back at the infographic now it is noticeable that there is no acknowledgement to the big part the aHUS alliance played . Nor is the quotation they used attributed to me. Perhaps that subliminally led to thoughts about the alliance having its own website.

Nevertheless it showed how it was possible for all those affected by aHUS to come together to collaborate on projects and help each other  Not all , many thousands of aHUS patients had, and still have, no idea of what happening for their Diseases on their behalf. Furthermore some of those who knew would chose not to become involved.

But a broader picture about our very Rare Diseases was beginning to be revealed and that in turn was gaining more outreach and not just on Rare Disease Day, however important that day remains.

Still time ( closing date Monday 18 February ) to join outreach in the alliance’s 2019 Rare Disease Day Video click here for more information.