This document provides statistics and information about thalassemia, including that it affects about 100,000 children worldwide each year. Treatment for one patient costs about $40,000 annually in the UAE. Screening and education programs can help reduce new thalassemia cases, saving billions of dollars in treatment costs over 40 years. The goal of screening programs in the UAE is to identify carrier couples and inform them of their options to avoid having an affected child.

1. Thalassemia Demographics & Statistics Year 2008

2. DISEASE Genetic Multi-factorial Environment Blood group, Thalassemia, Down syndrome Diabetes, Hypertension, Cancer Tuberculosis, Malaria, Typhoid fever

3. Genetic blood diseases in Arab World Thalassemia Sickle cell G6PD deficiency Carrier Disease

6. Children born with Thalassemia Disease : World: 100,000/year 12 children in one-hour India: 10,000/year 1 child every hour UAE: 50/year 1 child per week

7. Cost of Treatment (every year): One patient: AED 40,000 700 patients: AED 16 million New cases over next 40 yrs: AED 32 billion

8. Ideal outcome following introduction of screening/education programme for Thalassaemia Major

10. CANADA (Am J Hum Genet 1996 Oct;59(4):793-8 ) 1972-1992 Screened 25,274 High school Students 693 were carriers Virtually all the carriers identified remembered their status, had their partner tested took up the options to prevent EARLIER STUDY When to Intervene ? College/ University Vs Pre-Marital

11. Screening Strategies for the UAE The AIM of a screening program must be to offer carrier testing to every member of the population (or to one member of each couple) ideally before they have children. The PURPOSE is to identify carrier couples and inform them of their risk and options for avoiding it. The PRIME TARGETS of screening are those with  -thal,  -thal and Hb S, C, D, E in a well-selected target population.

12. Cause & Effect The relatively high prevalence of carriers in the UAE may be attributed to: Consanguineous marriages Founder effect Lack of information and awareness programs Absence of thalassemia screening programs Unavailability of dedicated laboratories Missed diagnosis of carrier state

13. LIFE EXPECTANCY Male: Female: 72.73 y 77.87 y ETHNIC GROUPS Emirati 19% South Asian 50% Other Arab & Iranian 23% Westerners and East Asians 8% July 2005 est. Population: 4.04 million Age 0-14 years: 25.3% 15-64 years: 71.1% 65 years and over: 3.6% Fertility rate: 2.94 children born/woman

14. Cyprus Greece Italy UK BTM births % Pre Natal Diagnosis PROGRAMS The graph demonstrates how thalassemic births were prevented through the implementation of PND programs in various countries