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.

He added that "This year, because of Covid-19 we are doing everything virtually and that is what we call the School Walk. We are going to walk to the various schools virtually and engage with the students and partake in their activities."

"The School Activation is basically meant to inculcate the culture of acceptance and inclusion of children living with Rare Diseases since the children will always end up in their social setting after visiting the hospital and as expected they will mingle with other children and if these children do not understand their conditions, they will not accept them," he said.

He also mentioned that as part of the activities on the Rare Disease Day 28th February, there is going to be the lighting up of a national monument like the Black Star Square upon which authorization is being sought.

The Rare Disease Day 2021 event is being organized in Ghana with the support of Takeda (a pharmaceutical company that makes products for rare diseases) and 54Gene (a biotech focused on equalizing precision medicine by including underrepresented Africans in global genomic research.

This is the fourth time in a row that the event will take place in Ghana and it took the country 10 years to join the global crusade.

The Rare Disease Day 2021, this year is the 14th observance on the global stage.

In addition, the organization will host a virtual symposium on Birth Defects and Rare Diseases. This is the 3rd symposium to be held since 2018.

The goal of the symposium is to improve knowledge and awareness of congenital anomalies, genetic and rare diseases among health workers, researchers, policymakers, and the general public.

The symposium is CPD-accredited to medical professionals especially Doctors who attend.

The symposium will take place on 3rd March which is the same day to commemorate global World Birth Defects Day.

Globally, Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

"Currently there are 7,000 prevalent rare diseases in Ghana and accessing the right treatment and diagnosis as well as the needed support for victims who suffer such conditions of health have been a very big challenge," he disclosed."By definition, if you have a disease that affects 1 to 57 people out of a 100,000 group of people then you are talking about rare diseases because it doesn’t occur frequently in the population. So diseases that do not occur frequently but once a while are what we call Rare Diseases,” the Clinical Psychologist explained.

"Most Rare Diseases do not have an approved treatment, in fact out of the 7,000 number of Rare Diseases that have been reported only about 5% have some approved treatment on them so a greater number of people living with rare diseases do not have access to treatment,” he added.

"We need to review our laws and also do more clinical testing. For instance, if you go to the US, they have the Orphan Drug Act. This Act gives incentives to pharmaceutical companies who are willing to make drugs for Rare Diseases and so they get 10-years exclusive rights and other things. These are some of the things that motivate industries to want to invest in the Rare Disease Community,” he emphasised.