The international community observes Rare Disease Day this 28th February 2019. The theme for reflection is, “Bridging Health and Social Care.”
This theme was chosen to highlight the need for a synergy in Government’s approach in dealing with persons living with rare diseases.
Representatives from the
medical, social and other support services will be expected to agree on a chain approach in caring for
patients and families of people living with rare diseases.
On the 12th edition, experts will reflect on the most efficient support to these patients.
They will also be expected to agree on how the different actors can provide a coordinated care for the patients and families.
Medics define a rare disease as any disease that affects a small percentage of the population.
Experts say most rare diseases are genetic even if symptoms do not always appear immediately.
Some facts and figures on rare diseases
According to available statistics, 30% of children with rare diseases die before the age of five.
Some 300 million people worldwide are affected by close to six thousand different rare diseases.
The European Organisation for Rare Diseases (EURORDIS) established this day in 2008 to raise awareness on this health situation that is never given due attention.
The organisation lobbies for better treatment and social support to persons with rare diseases and their families.
Eleanor Ayuketah Ngochi