This year marked the 13th International Rare Disease Day and the 3rd in Ghana. The event was an extremely successful one largely due to the high level of support and enthusiastic participation from our various partners and stakeholders. The Rare Disease program was a three (3) day event with the first two days targeted towards sensitizing students and promoting the culture of acceptance and inclusion within our educational institutions. On the last day, a symposium was organized to increase public awareness among the various stakeholders about the different rare diseases and orphan products.
This year marked the second symposium on Rare Diseases and Orphan products with the theme ‘Reframe Rare Diseases: A Collaborative Approach to Resolve the Burden of Rare Disease in Ghana’. The symposium was the climax of the three-day programme. The event was held at the O&G Auditorium of the Korle-Bu Teaching Hospital in Accra. The symposium was moderated by Emily Sheldon, CEO of the African Health Innovation Center (AHIC).
The symposium was split into two sessions with the first session being a series of presentations given by government representatives and clinicians on rare diseases in Ghana and the challenges faced with early diagnosis and treatment.
We kick-started with a presentation from Dr Degbotse, the Head of Monitoring and Evaluation Unit of the Ministry of Health, who addressed the audience and highlighted the government’s commitment to promoting Universal Health Coverage and ensuring healthcare for all including persons living with undiagnosed and rare diseases. He commended Rare Disease Ghana Initiative and gave the assurance that the ministry has opened its doors to work closely with RDGI and other support groups in Ghana. The Director, Institutional Care Division of the Ghana Health Service, Dr Samuel Kaba who was also in attendance spoke about current and emerging policies that support rare diseases in Ghana. Following his presentation, the founder and executive director of Rare Disease Ghana Initiative, Mr Samuel Wiafe gave an address on the status rare disease program in Ghana and highlighted some successes chalked by the organisation. Professor Badoe, a renowned consultant pediatric neurologist and former head of department at the Child Health Department of Korle-Bu Teaching Hospital (KBTH), gave a presentation on disabilities-determinants, early diagnosis, management and public health response in Ghana. This was followed by a presentation by Dr Ameyaw, a pediatric endocrinologist at Komfo Anokye Teaching Hospital (KATH), who spoke on rare metabolic diseases in children. Dr Ebo Acquah, a haematologist at KBTH, gave a very insightful presentation on rare blood disorders seen in Ghana, urging clinicians to do away with the thinking that some diseases are ‘Caucasian diseases’ to enable early detection and diagnosis of rare diseases. Dr Patrick Anum, an OBGYN at the feto-maternal unit of the Department of Obstetrics and Gynecology at KBTH, also gave a message of hope which involved an exposition on non-invasive prenatal and new-born screening tests for congenital anomalies. Regarding mental and psychosocial wellbeing of persons affected by undiagnosed and rare diseases, Mrs Charlotte Esi Myers, a Clinical Psychologist at LEKMA Hospital and a member of the Ghana Psychology Council spoke on the need to address psychosocial issues in undiagnosed and rare diseases and raised awareness about the need for more clinical psychologists to be included in the management team to manage emotional issues of patients and caregivers.
A patient panel began the second session where individuals living with rare diseases shared their experiences and educated us on the realities they face and the day-to-day challenges they encounter in Ghana. It was indeed raw, real and enlightening. We sincerely appreciate them having the courage to open up about their experiences. Their recommendation to the government was for early diagnostic testing and treatment to be made available for people in underserved areas.
An expert panel made up of representation by Mrs Adah a pharmacist from FDA Ghana; Mr John Klu, Head of Access, Policy and Government Affairs at Roche Pharmaceuticals; Dr Yakub Hakan Basaran, Chief Medical officer from Synlab Ghana; Dr Nicholas Ekow Thomford, a researcher with affiliations in Genetics at the University of Cape Coast and Mandy Budge, CEO of Multikids Inclusive Academy, discussed strategies to bridge access to health and social care for persons living with rare diseases in Ghana. To conclude the event, the collective agreement was that sharing of data (within an ethical framework) is key to overcome some of the challenges.