PID Care in Development Working Party
PID Care in Development - Newsletter December 2016
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by Peter Jandus
As previously mentioned, we have started the ESID online learning portal with the case studies in spring 2016. We hope to accomplish our work at the end of 2016. Meanwhile ESID members can have access to eposters and webcast presentations of the 17th Biennial Meeting of the European Society for Immunodeficiencies in Barcelona. It is a continuous developing work. The aim is that ESID-member will have access worldwide to the same information and training in the field of PID, irrespective of the nationality.
There is only one PID care and ESID, IPOPI and INGID fulfill the same function at different levels. In this mind we shared a parallel session about ethical dilemmas in PID genetics and a workshop together at the Biennial Meeting of the European Society for Immunodeficiencies in Barcelona. An interaction like this has not been established before between these three societies. In the next years I would like to deepen the contact to IPOPI and INGID.
Entirely in line with our better collaboration, my working party has already attended the IPOPI PID Forum of the 12th October 2016 at the European Parliament in Brussels. We could notice different disparities in the EU for PID care. Representatives from Slovakia, Italy and Rumania explained the different situations of having access to diagnostic facilities, to treatment (IVIG, bone marrow transplantation), and to reimbursement. Things have changed, but we can see without any doubt differences across Europe persist. In order to know the needs and difficulties of each country we need to know more. For this reason my working party plans to collect information about access to diagnostic facilities, treatment, health care and reimbursement.
My goal is to make ESID closer for their members and let their contributions, ideas and suggestions influence our society. Only an open constructive discussion can help to develop one society. ESID members are all invited for contributions and ideas.