1. 1. Hungarian Kidney Foundation 2. Institute of Pathophysiology, Faculty of Medicine, PhD School of Medical Sciences, Semmelweis University, 3. Department of the Hungarian Congenital Abnormality Registry and Surveillance, National Center for Healthcare Audit and Inspection, 4. Avicenna International College, Budapest, Hungary. László Rosivall 1,2, Miklós Molnár 2 Judit Béres 3, Shahrokh MirzaHosseini 4 Multiple Disadvanteged People, Hungarian Example 8th Conference of Kidney Disease in Disadvantaged Populations Satellite Symposium of the World Congress of Nephrology, Victoria, British Columbia, Canada April 12 th – April 14 th, 2011

2. Gypsies in Europe Multiple arrivals in Europe from India centuries ago Different populations Stretching across country borders A number of genetic disorders seen (assumed that galactokinase deficiency and the congenital glaucoma mutations: Indian origin)

3. Roma Education Level in Hungary (%) SubjectTotalMaleFemale Incomplete elementary 30,224,236,1 Elementary36,437,934,9 Vocational20,626,614,7 High school11,410,512,4 Higher education 1,30,91,8

4. Job Status Before Global Recession Non- segregated SegregatedGetto Just studies6,13,82,7 Active Worker31,028,213,9 Unemployed30,836,844,2 Maternity leave10,216,618,5 Pension5,25,75,3, Disabled16,713,015,5

5. Frequent Genetic Diseases of Gypsies Primary Congenital Glaucoma (1/10000 vs. 1/1200), with strong regional differences Congenital Myasthenia Syndrome (AChR, epsilon mutation, almost exclusively in Roma population) Spinal Mucsular Atrophy Inherited Limb Muscular Dystrophy (type 2C) Epidermolysis Bullosa Galactokinase deficiency Glanzman Thrombasthenia Autosomal Dominant Polycystic Kidney (ADPKD 2 in a certain region x 20 higher)

6. Gypsies - Hungary One of the declared goals of Hungarian EU presidency is to address the integration issue of the Roma population all over the Europe.

7. East-North Hungary: A Sample Dialysis Center Data (B.Braun) Total No patients: 222 (Gypsy: 14; 6%) Hemodialysis Patients : 183 (11 Gypsy, 6%) CAPD : 39 (3 Gypsy, 8%) Background Disease: Diabetes mellitus : 6 pax Chronic Nephritis : 8 pax (3 TIN, 2 nephrosclerosis, 3 GLN)

8. Transplantation-Related Characteristics of Group A (Caucasians) and Group B (Gypsies) Age, yr ± SDHLA mismatches ± SD Group A (n = 1825)422,89 Group B (n = 93)343,06 * * * * * Langer et al, Transplantation Proceedings, 37, 729–730 (2005)

9. Patient and Graft Survival in Group A (Caucasians) and Group B (Gypsies) Caucasians Gypsies % * * * * Langer et al, Transplantation Proceedings, 37, 729–730 (2005)

10. Mean of KDQOL point Quality of Life inTransplanted patients Score of different HRQOL domains in TransQoL-HU Study (n=1067) -2002 p>0.05 in all domains There is not much difference (unpublished)

11. Depression CESD score (median, IQR) from TransQoL-HU Study (n=1067) - 2002 p=0.06 GypsyNon Gypsy (Unpublished)

12. Prevalence of depression GypsyNon Gypsy p=0.03 % (Unpublished)

13. Survival analysis TransQoL-HU-2002-2010 (Unpublished)

14. Graft Survival analysis TransQoL-HU-2002-2010 (Unpublished)

15. Further clinical observations ESRD more frequent, similar to Afro-Americans Recive blood transfusion from non-Roma blood donors Have many children, possibly from different fathers B blood group is more frequent among them HLA incompatibility is more frequent Cultural, social, economical disadvantage are contributory factors Living kidney donors are recommended

16. ISU usage in MINIT-HU Study (n=993) -2007 Immuno-biological Differences ? *: p<0.05 *

17. Conclusion Differences in outcome of the renal transplantation and frequency of different renal diseases are due to genetical, economical, social and cultural differences. Because of this complex background, the improvement in their health status is also complex and needs a holistic approach.