As Ghana joined the world to celebrate Rare Disease Day on Sunday, February 28, 2021, Rare Disease Ghana Initiative (RDGI), a non-governmental organization has called on the government to ensure equity in health delivery to meet the needs of persons with a rare disease in the country in fulfillment of the Sustainable development goal on health.
Rare diseases are conditions that are life-threatening or chronically debilitating and statistically rare (less than 1 in 2,000 people living with the condition).
There are about 7,000 different types of rare diseases which according to research currently affect at any point in time 3.5% – 5.9% of the worldwide population, equivalent to a conservative estimate of 300 million people worldwide (4% of an estimated world population of 7.5 billion).
72% of the rare diseases are genetic, and of those 70% start in childhood.
Some of these Rare Diseases are Anorectal Malformation/ Imperforate Anus, 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, and Patau Syndrome
Founder and Executive Director of Rare Disease Ghana Initiative, Samuel Wiafe, told Mybyrtfmonline.com, even though only about 5% of rare diseases have approved treatment, the healthcare system in Ghana does not have any policy intervention to facilitate medical support for persons with rare diseases.
“We are focused on promoting universal access through equity. We think everybody needs to have access to quality healthcare and we are asking that it is also tailored towards specific needs. It is not enough to have a CHP compound in a village somewhere if there is not access or support to patients so at least we need to equip the system as well. Be able to provide some resources that can be at least provide tangible care for the rare Disease community and so we are asking for equity to healthcare”. Samuel Wiafe said.
Globally, Rare Disease Day is observed 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.
Samuel Wiafe believes that continuous advocacy and awareness about rare diseases among the Ghanaian populace would help address some of the challenges facing the rare disease community including the myths about persons with such diseases.
“Generally we all need to support create public awareness and interest, and so we launched a campaign called “I am Rare I care Campaign” and different people signed on to that to help create awareness”.
Rare Disease Ghana Initiative was established in 2017 to advocate for policy intervention and support for people living with rare diseases in Ghana.
The NGO as part of its advocacy programs to celebrate 2021 Rare Disease Day lined many events including hosting a virtual symposium on Birth Defects and Rare Diseases on March 3, 2021, 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.
Source: Mybyrtfmonline.com/Obed Ansah
