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Activities for 2021 Rare Disease Day go virtual in the wake of COVID

Thu, 18 Feb 2021 Source: Kasapa FM

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 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.

About Rare Disease Ghana Initiative

Rare Disease Ghana Initiative was started in 2017 after the executive director saw the need to advocate for people living with rare diseases in Ghana when he came across a family affected by an undiagnosed syndrome.

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.

After realising the impact of undiagnosed and rare diseases on the family and the challenges within the healthcare system, he has established Rare Disease Ghana Initiative to champion advocacy and support for families affected.

Rare Disease Ghana Initiative (RDGI) is a registered national Non-Governmental Organisation in Ghana made up of a network of professionals, patients, caregivers and organisations whose aim is to develop, seek wide endorsement and to advocate for the implementation of a plan to support research, education, service development and seek support for individuals and families affected by undiagnosed, genetic and rare diseases in Ghana.

RDGI brings together rare disease patient support groups, charitable and non-profit organizations, health organizations, clinical experts, researchers, emerging biotech enterprises, and industry partners to take action on rare disease in Ghana and in collaboration with international alliances.

Rare Diseases Ghana Initiative works in partnership with government, government agencies, industries, individuals and other non-governmental organizations to take action on rare diseases.

Some of these Rare Diseases are

Treacher-Collins Syndrome

Waardenburg Syndrome

Osteochondrodysplasias

Diastrophic dysplasia

Fragile X Syndrome

Rubenstein-Turby Syndrome

Down Syndrome (Trisomy 21)

Abdominal Neuroblastoma

Congenital heart disease

Porencephaly

Facial Oblique Syndrome

Patau Syndrome

Edwards Syndrome (Trisomy 18)

Anorectal Malformation/ Imperforate Anus

Source: Kasapa FM