PID Care in Development Working Party

PID Care in Development WP Newsletter April 2018

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by Peter Jandus

The PID Care in Development Working Party (PIDCD WP)

Dear friends and dear members,

I am pleased to inform you that we have again planned a joint session with ESID, IPOPI and INGID at the 18th ESID Biennal Meeting in Lisbon 2018. The last joint session with ESID, INGID and IPOPI took place during the Biennial Meeting in Barcelona 2016. We hope that this joint session with all three societies that are involved in PID care will be as interesting as the last time.

So far there has been no new positive news about immunoglobulin supply in Eastern Europe. For several years I have been trying to address this problem to the companies in the hope that we can together develop strategies to overcome this problem. The idea has been well received, but unfortunately there is no progress to be announced.

Regarding immunoglobulin supply, IPOPI has planned session with PPTA and IPFA during the 18th ESID Biennal Meeting in Lisbon 2018. The session will be very interactive with possibilities to do questions from the audience. Further, IPOPI has been involved in the PPTA conference IPPC 13-14th March where immunoglobulin supply was also an issue. Rapid changes are not to be expected. In my opinion, change can only be brought about by external pressure. ERN and RITA can play a decisive role in the future. Standardization of treatment standards and legislation throughout Europe is necessary to overcome this discriminatory treatment of patients. Unfortunately, we are only at the beginning of this long journey.

Meanwhile, we have started to work on two more interesting interactive case studies for the ESID Online Education portal. The work is progressing well. We hope to make them available to ESID members in autumn 2018.

My goal is to make ESID closer for their members and let their contributions, ideas and suggestions influence our society. So your input is important! With your contribution we can make it better. ESID members are all invited for contributions and ideas.


Peter Jandus, MD