March 23, 2016

Slovakia – Raising PID awareness

Slovakian Association of Patients with Primary Immunodeficiency (Immunodeficit) was established in 2015 and is very excited to share its most recent achievements with the international primary immunodeficiencies community.

The Association recently produced a video with patient testimonials from three patients that are members of our Association. They speak very openly about the long way that led to their CVID (Common Variable Immunodeficiency) diagnosis. They explain the challenges of their daily lives and share the difficulties they face with the national social security system.  The video is available on our website and on our Facebook page.  The video was done free of charge in cooperation with a prominent Slovak media agency called Seesame, that will be helping Immunodeficit gain media attention. This is a very important first step in starting public discussion about what it really means to be a PID patient in Slovakia.
In January we published the first issue of our quarterly magazine “Imunodeficit” which was very welcomed by our members. The aim of the magazine is to provide patients and their relatives with information about PIDs, treatment options, legal issues and other practical advice.
The first issue contains articles about immunoglobulin (plasma donation, manufacturing of IG, administration methods, safety), traveling when you have a PID, employer benefits for employing disabled persons, Q&A on legal counselling.
A printed version of “Imunodeficit” is distributed in immunologists’ waiting rooms and made available to people who are not regular internet user.