Yet another ERKNet Annual Meeting took place in Heidelberg , Germany in May 2019.
In over a month since it was held nothing has been communicated from it of relevance to aHUS patients. The alliance cannot establish whether any one representing the aHUS community was present let alone what was talked about or decided upon at it.
EURODIS is responsible for patient involvement in the EU European Reference Networks initiative of which ERKNet is a part but as the alliance has found from the beginning of ERKNet the E Patient Advisory Group set up ,whilst having great intentions (see below) , has not served the aHUS patient community well at all. The problem being the EPAGs failure to communicate with European aHUS patient organisations let alone aHUS patients. Particularly the EPAG for the TMA thematic Group within ERKNet of which aHUS is one disease ( see previous article to understand ERKNet’s structure click here).
Indeed it has only been the alliance that has communicated anything to do with ERKNet of relevance to patients , not only in Europe but throughout the world. Whether on its website or in its social media .Although it is not an EPAG member of ERKNet it has been overtly supportive.
The alliance has:
The EPAG for TMA has communicated nothing , nor does it seek input.
This is not down to the clinical governance of ERKNet , EURORDIS is responsible for EPAGs.
According to the programme there were sessions about E PAGs , patient website , patient involvement and work group for TMA. There was also a session on the new ERKNet Patient Registry
Recently the alliance posted on Facebook news from the UK aHUS Expert Centre in Newcastle upon Tyne that one of its team , Dr Michael Malina, gave a presentation at the ERKNet meeting about the variable patient access to eculizumab throughout Europe. Something which has featured on the alliance pages for sometime , yet nothing about it has been said about by the TMA EPAG , not even on EURORDIS Rare Connect platform, nor the moribund FEDERG website.
aHUS patients deserve better.
The ERN Project has a long future ahead with the promise of better outcomes for patients but if patient involvement is to improve, EURORDIS must look at what it says will it do and what is actually being done , and address the gap.
Alone we are rare together we are strong ,but only if we work together.
*The role of ePAGS
Specifically, ePAGs and ePAG advocates: