Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases. Rare Disease Day events are down to hundreds of patient organisations all over the world who work on a local and national level to raise awareness for the rare disease community in their countries. Ghana joined the world in this campaign for the first time in 2018.
This year’s Rare Disease Day was observed on the 28th of February, 2019 in Accra, Ghana. Ghana was part of the 100
countries that made it a point to celebrate Rare Disease Day. This is the second time Ghana joined the world to celebrate the day which was organised by Rare Disease Ghana Initiative. The event was celebrated in two days. On the 27th of February, 2019, Rare Disease Ghana Initiative collaborated with Multikids Inclusive Academy, which is an all inclusive school, educating children in a vibrant inclusive and specialized environment, regardless of academic, social or physical needs to engage in face painting activities in honour of Rare Disease Day. The team and kids also went to the AnC Mall in East Legon, Accra to share fliers and engage the public to create awareness for Rare Diseases and the Rare Disease Day. The day was climaxed with a cake cutting celebration; with cake donated by Nuvivicakes Ghana through the Buame Africa Project. The kids were ecstatic and glad to have been a part of the whole celebration.