In Ad-Dustour: a call for faster diagnosis, better care, and a national rare-disease registry in Jordan.
Ad-Dustour newspaper published, on World Systemic Sclerosis Awareness Day, ORDA’s call to raise awareness of rare diseases and speed up efforts to improve diagnosis and care, stressing the need for a national registry and accurate database of rare diseases in Jordan.
Nazeer Al-Tal, a member of ORDA’s patient-voice committee, spoke about systemic sclerosis as one of the most complex rare autoimmune diseases, which can affect the blood vessels, lungs, heart and digestive system, and is often diagnosed late because its symptoms resemble other conditions.