Resources

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. 

By: Lisa Foster  |  12 June 2020 

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....

Last access:  6 June 2020, 1:32 PM SGT

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.

APE Action Plan on Rare Diseases

Last access:  4 July 2019, 8:45 AM SGT

The aim of the APEC Action Plan is to improve the economic and social inclusion of all those affected by rare disease by addressing barriers to healthcare and social welfare services by 2025.

If you have any questions or would like more information about rare disease in Asia Pacific, our advocates around the region will be happy to help.

Email:  admin@apardo.org

Phone:  (65) 6337 1990

© 2019 by Asia Pacific Alliance of Rare Disease Organisations