Rare Disease Ghana Initiative (RDGI) a Non-Governmental Organisation recently held its annual celebration on the 29th of February, 2024.In a moving event that illuminated the importance of raising awareness for rare diseases in Ghana, the initiative lighted up the Greater Accra Regional Hospital to commemorate the celebration.
The event, held to commemorate Rare Disease Day, brought together individuals, families, and advocates to raise awareness and support for those affected by rare diseases.The event provided a platform for dialogue emphasizing the importance of solidarity in addressing the challenges faced by the rare disease community.
Addressing the gathering, the Executive Director of the RDGI who is also a Clinical Psychologist, Mr. Samuel Agyei Waife, shared his passion for the organization’s mission and the impact of their work on the lives of individuals living with rare diseases. “Our goal is to ensure that no one facing a rare disease feels alone or unsupported. Through education, advocacy, and community engagement, we strive to create a more inclusive and understanding society for all”, he said.
According to him, every year on the last day of February they come together to observe Rare Disease Day.
“It is a day dedicated to raise awareness and create support for over 300million who live with rare disease around the world”, he added.He further explained that it is a global event which has been happening for seventeen years but Ghana joined in since 2018 and this is the seventh Rare Disease day we are observing.
Mr. Waife called, policy makers, the general public, clinicians, researchers, the patients community and everyone to all come together to make sure that the needs and interest of persons living with rare disease is considered.
The Clinical Psychologist bemoaned that a significant number of people living with the disease are undiagnosed so they use this moment to raise the voice and make sure that they find those disease that have not yet been diagnosed.
He also called on the government for a National Policy on Rare Diseases and part of this policy is for government to be very intentional in training health professionals to be able to identify and treat rare diseases within our healthcare systems.This, he said will help them to adequately diagnose and manage rare diseases.
Moreover, “We also need to inculcate genetic services in our healthcare because that is one of the tests you need to diagnose many rare diseases. This will also include having new born screening where every child born in Ghana would be tested before leaving the hospital”, he told the media.
He urged that, “ have to get treatments into the country for treatments thus it has to be included in on our essential medicine list and the National Health Insurance that will take care of the cost for rare diseases.”
The Head of Clinical Services at the Greater Accra Regional Hospital, Dr. Ralph Armah, expressed gratitude for the celebration saying “It is the day where we as clinicians and general public get to know more about diseases that are uncommon and do occur in our society.”
To Mr. Armah, most of these rare disease turn to have genetic background and so usually there are certain things ascribed to it because they are uncommon.
“As in being due to some spiritual disease or witchcraft but these things are things we know from literature and every now and then when they do occur they become conditions by which we as clinicians turn to learn”, he also explained.
“So basically it is a collaboration between clinicians and diagnostics in arriving at a clinical conclusion with whichever case we’ve seen and we move on to the treatments”, he concluded.
