1. NURSE´S ROLE IN CARING FOR PID PATIENTS IN SLOVENIA Maja Čamernik, RN University Children´s Hospital Ljubljana Dpt. of Allergology, rheumatology and Clinical Immunology

2. Faculty Disclosure Company Name Honoraria/ Expenses Consulting/ Advisory Board Funded Research Royalties/ Patent Stock Options Ownership/ Equity Position Employee Other (please specify) Example: company XYZ xxx XNo, nothing to disclose Yes, please specify:

3. SLOVENIA 20 273 km²; 20 273 km²; 2 061 085 inhabitants; 2 061 085 inhabitants; Euro (€); Euro (€); Ljubljana, 282 994 inhabitants; Ljubljana, 282 994 inhabitants; Independant since 1991; Independant since 1991; Joined EU in 2004. Joined EU in 2004.

4. SLOVENE LANGUAGE Primož Trubar (1508- 1586); Primož Trubar (1508- 1586); Protestant reformer; Protestant reformer; First 2 printed books in Slovene language in 1550; First 2 printed books in Slovene language in 1550; 31st October is a birth day of Slovene literature language. 31st October is a birth day of Slovene literature language.

5. PID CENTER University Children´s Hospital in Ljubljana; University Children´s Hospital in Ljubljana; Dept. of alergology, rheumatology and clinical immunology; Dept. of alergology, rheumatology and clinical immunology; JMF Diagnostic and Resurch Center for PID in Slovenia. JMF Diagnostic and Resurch Center for PID in Slovenia.

6. WHO WE ARE? 21 nurses all together; 21 nurses all together; 4 in out-patient dpt., others in a hospital ward; 4 in out-patient dpt., others in a hospital ward; 2000-2200 addmitances, 9000-10 000 out patient assessments. 2000-2200 addmitances, 9000-10 000 out patient assessments.

7. WHAT WE DO?

8. WHAT WE DO? WHAT WE DO? A National registry of PID patients (about 200 patients with 50 different PIDs); Genetic tests are available in Slovenia → better diagnostics → ”more” patients, different treatments, different nursing care; IVIG products are “better”, protocols of infusing have changed, infusion rate is higher and nurses have to monitor vital signs more often (according to a protocol); SCIG available in Slovenia: nurses had to learn how to administer them to be able to teach patient and their parents to do this themselves at home;

9. WHAT WE DO? BMT: 5 patient have had BMT in Slovenia, 4 in Switzerland, 1 in UK → patients are staying in our department before and after BMT, so nurses must now how to take care of such patients; 5 patients are waiting and preparing for BMT and they are monitored monthly in out-patient dpt. Education: we have to get new knowledge and we have to give the knowledge we have; Taking part in medical (physician led) research as clinical research nurses; In the future: leding our own nursing reasearch

10. WHAT WE DO? Slovene Society for patients with immune deseases was established in 2011 and nurses are a vital part of it. And it is a rewarding experience, because we get to know patient “privately”, we get to know their families also when they are not in the hospital and in bad condition. Organized events that bring patient and health professionals together where they can share opinion, informations, talent….. “Spreading” the word about PIDs, about treatments (also the costs of it), about life with PID and…… is very important, because people don´t even know what immuno defficience means.

11. THANK YOU FOR YOUR ATTENTION!