An interview with ORDA’s president Aydah Abu Eliem and Dr. Eman Al-Massad on missing national data and the long road to diagnosis.
In an interview with Al-Rai, ORDA’s president Aydah Abu Eliem and Dr. Eman Al-Massad of the Institute of Public Health discussed the main rare-disease challenges in Jordan: no unified national registry, a long road to diagnosis, and the high cost of genetic testing and treatment.
Estimates based on global prevalence suggest about half a million people in Jordan may be living with a rare disease. Abu Eliem noted that about 75% of rare diseases affect children, and that ORDA is working with the Ministry of Health towards a national registry and to bring patients under the umbrella of the Higher Council for the Rights of Persons with Disabilities.