Rare Disease Ghana Initiative (RDGI), a non-governmental organisation, recently held its annual celebration on 29 February, 2024.
In a moving event that illuminated the importance of raising awareness for rare diseases in Ghana, the initiative lit 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, emphasising 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, Samuel Agyei Waife, shared his passion for the organisation’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 raising awareness and creating support for over 300 million people who live with rare diseases around the world,” he added.
He further explained that it is a global event that has been happening for seventeen years but Ghana has joined in since 2018 and this is the seventh rare disease day we are observing.
Waife called on policymakers, the general public, clinicians, researchers, the patient community and everyone else to come together to make sure that the needs and interests of people living with rare diseases are considered.
The clinical psychologist bemoaned that a significant number of people living with the disease are undiagnosed so they use this moment to raise their voice and make sure that they find those diseases that have not yet been diagnosed.
He also called on the government to have a national policy on rare diseases, and part of this policy is for the 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 will be tested before leaving the hospital,” he told the media.
He urged that “we have to get treatments into the country for treatments, so it has to be included on our essential medicine list and the National Health Insurance that will take care of the cost of 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 the general public get to know more about diseases that are uncommon and do occur in our society.”
Armah, most of these rare diseases have a genetic background and so usually there are certain things ascribed to them 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.
Asaase Radio 99.5 broadcasts on radio via 99.5 in Accra, 98.5 in Kumasi, 99.7 in Tamale, 100.3 in Cape Coast and on our affiliates Azay FM 89.1 in Takoradi, Bawku FM 101.5 in Bawku, Beats FM 99.9 in Bimbilla, Somua FM 89.9 in Gushegu, Stone City 90.7 in Ho, Mining City 89.5 in Tarkwa and Wale FM 106.9 in Walewale
Tune in to broadcasts online: asaaseradio.com, Sound Garden and TuneIn
Follow us on Twitter: @asaaseradio995
Live streaming on facebook.com/asaase99.5. Also on YouTube: AsaaseXtra.
Join the conversation. Call: 020 000 9951 or 059 415 7777. Or WhatsApp: 020 000 0995.
#AsaaseRadio
#TheVoiceofOurLand
#WeAreHere
#WeLoveOurLand
