Coordinated Database Must To Treat Rare Diseases: Experts

Consultants, policymakers and academe officials from the UAE, Saudi Arabia, Oman and Kuwait take part in an online discussion called ‘Rare Diseases in the Middle East: Improving Diagnosis and Treatment’

- Mariecar Jara-Puyod

The socio-economic impact of rare diseases which regional medical experts claim, affect 2.2 million children of the 2.97 million afflicted in the Middle East, is resolvable by way of a multi-sectoral collaborative approach.

Through a multi-sectoral collaborative approach, it is hoped that a well-organised and coordinated, national to regional constantly updated rare diseases database is achieved, towards the realisation of implementable country to region-wide policies. This calls for the active participation of and cooperation among policymakers, doctors and nurses, educators, non-government organisations, support groups and the pharmaceutical industry. Awareness campaigns, as well as continuous research and development for therapeutics and advanced evidence-based scientific remedies, are seen as solutions.

Necessary are empowered nurses, patients and their families.

The suggestion came from top rare diseases consultants, policymakers and academe officials from the UAE, Saudi Arabia, Oman and Kuwait who guested at the recent online “Rare Diseases in the Middle East: Improving Diagnosis and Treatment” hosted by The Economist Events.