Looking for POLISH and LITHUANIAN readers

The following post has permission from the moderators:

Short introduction:
I am Marleen, founder & President of PSC Patients Europe. I recently graduated from the EUPATI Patient Expert course.

I am active within the ERN-RARE-LIVER, THe Euroepean Reference Network for rare liver diseases, accepted by the EUriopean Commission.

<<…European reference networks (ERNs) for rare diseases should serve as research and knowledge centres, updating and contributing to the latest scientific findings, treating patients from other Member States and ensuring the availability of subsequent treatment facilities where necessary. The definition of ERN should also reflect the need for services and expertise to be distributed across the EU…>>

The ERNs will be exrtemely beneficial to all patients.
Currently we are in parallel starting up patient organisations (PSC and/or rare liver) in various countries. We can’t do all countries at the same time, we are starting with Poland and Lithuania.

If you are a POLISH member of this group, I am happy to inform you a small group recently started a Polish PSC patient organisation and they are looking for people to connect .

If yo are LITHUANIAN: I will be in Vilnius and Kaunas March 5-10, 2017 talking to various stakeholders to set up a patient organisation.

Please post below if you are interested in learning more.

Kind regards