Activities for 2021 Rare Disease Day go virtual in the wake of COVID LISTEN
FEB 18, 2021
As part of efforts to ensure strict adherence to COVID-19 protocols, activities lined up for this year s 2021 edition and commemoration of the World Rare Disease Day which falls on the 28th of February will be done online with a series of virtual engagements with some selected schools.
This was disclosed by the Executive Director of Rare Disease Ghana Initiative, a Non-Governmental Organisation, Mr. Samuel Agyei Wiafe a Clinical Psychologist during a media briefing in Accra.
He further indicated that this year s event will engage the Association International School and the Tema International School respectively as part of the School Activation event.
More support needed to help people living with Rare Diseases LISTEN
FEB 18, 2021
It has emerged that Ghana lacks a policy framework meant to deal with health matters in relation to 7,000 prevalent rare diseases, and also the right treatment and the needed support for victims who suffer such undiagnosed conditions of health.
A rare disease is any disease that affects a small percentage of the population. Most rare diseases are genetic and thus are present throughout the person s entire life, even if symptoms do not immediately appear.
Many rare diseases appear early in life, and it is always likely about 30% of children with rare diseases will die before reaching their fifth birthday.