Rare diseases in Asia and the Pacific must be tackled too
By: Ritu Jain | 20 July 2020
In consideration of the current state of the world during the COVID-19 crisis, it is important that we do not let it overshadow the various rare diseases encountered in the Asia-Pacific regions. While the word "rare" is used to describe them, they still present a burden on the populace with how inadequate various health organizations' approaches to these diseases are. Without significant data and a broader set standard for care, patients will encounter difficulties in receiving the appropriate care they need to manage their disease.
The ECRD is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies. One of the opening statements by Stella Kyriakides, European Commissioner for Health & Food Safety summed up the conference ethos....
BCD is a chorioretinal degeneration characterized by the presence of yellow or refractile crystals and/or complex lipid deposits in the retina and for some patients in the cornea. BCD patient symptoms include night blindness, distorted vision, light sensitivity, reduced visual acuity, blind spots, reduced contrast sensitivity, impaired color vision, and eventually legal blindness.