Rare diseases day is a day set aside to create awareness on the (+7000) rare diseases in the world. Various countries commemorate the day on different dates throughout the month of February,culminating to one global celebration on the 28th of February. This year, Kenya will commemorate the day on 24th February at Gertrudes’s Children Hospital in Muthaiga.
Kenya has marked this day since 2014. A disease is termed as a rare disease if it affects a small percentage of the population. Most rare diseases are genetic, hence chronic; with a large percentage affecting children.
Together with other parents of children with rare diseases, and patients themselves, we have come together to form an umbrella body (Rare Disease Kenya – RDK) that will create awareness on the rare diseases in the country. Some of the rare diseases represented include but are not limited to; Congenital Central Hypoventilation Syndrome, Eosinophilic Enterocolitis, Hereditary Angioedema, Joubert Syndrome among others.
Step by Stones together with Muscular Dystrophy Society of Kenya spearhead the commemoration of Rare Disease day.