Rare disease day is a global event held to raise awareness and support for rare diseases. It is mostly held on the last day of February (so 28 on non-leap years and 29th on Leap years) and promoted by EURORDIS, an international patient-driven alliance of rare disease patient organizations. This year marks the first time such an event has been organized in Ghana to support rare diseases. The event was put together by Rare Disease Ghana Initiative, an initiative with the mission to improve the quality of life of families affected by rare diseases in Ghana through advocacy, awareness creation, research, patient support and partnership. The event was dubbed #RareShowcase which took place from the 26th – 28th February, 2018.
The event commenced with Social media awareness which started on the 26th. Hundreds (100s) of people shared posts on rare diseases via their social media accounts with the tag #ShowYourRare #RareShowcase2018 #RareDiseaseDay2018 to show their support. Our tweeter post made on the average 5,402 impressions while promoted posts from our Facebook page could reach about 8,861 people. We also enjoyed on the average 17 likes per day on our Instagram posts during the period.
On the 27th, the Founder/Executive Director of the Rare Disease Ghana Initiative Mr. Samuel Agyei Wiafe gave a talk to a team of researchers lead by Prof. Mate-Kole at the Department of Psychiatry of Korle-Bu Teaching Hospital during one of their weekly research meetings. In his presentation, Mr. Wiafe highlighted that a Rare Disease is a diseases that affect a very small number of people in a population. Per the international definition, it affects 1 in 25000 people. He added that about 350 million people are reported to be affected. In addition, he said that globally, there are about 7000 rare diseases identified and many more being discovered daily. About 80% of rare diseases are genetically inherited and thus are present throughout and individual’s life even when symptoms do not immediately appear and approximately 50% of people affected are children. Though individually rare, collectively rare diseases pose a huge public health burden on the country and the families they affect and this is why the scientific community and government need to pay some attention to rare diseases.
The burden of having a rare disease in Ghana and Africa at large may be worse due to some socio-cultural issues that impact on healthcare delivery in the sub-region as well as high prevalence of HIV/AIDS and malaria create access issues for people affected by rare diseases and this is why they need support. He encouraged the team of researchers to show some interest in investigating about rare diseases and assist to find some answers to the questions associated with living with rare diseases especially in Ghana and Africa context. The researchers showed their support and solidarity to families and people living with rare diseases in Ghana and across the world as well as the Rare Disease Ghana Initiative by taking some pictures to support the day.
On the 28th February, a team from Rare Disease Ghana Initiative joined Ghana International School (GIS) in their event organized by the school to show support and love towards the son one of their formal tutors who had been diagnosed with WAGR Syndrome. WAGR syndrome also known as WAGR complex, Wilms tumor-aniridia syndrome, aniridia-Wilms tumor syndrome is a rare genetic syndrome in which affected children are predisposed to develop Wilms Tumor (a tumor of the kidney ), Aniridia (absence of the coloured part of the eye, the iris), Genitourinary anomalies, and Mental Retardation. The students engaged in face painting and hand painting to support this day. They also watched a short documentary about WAGR Syndrome. After, there was a drone captured image of love created by the students, teachers and the team from Rare Disease Ghana Initiative.
Overall, the rare disease day event though it was the first time was successful. We enjoyed every aspect of the event and we know that this will go a long way to instill some hope in person and families battling with rare or unknown/undiagnosed conditions in Ghana.
Rare Disease Ghana Initiative would like to acknowledge and show their appreciation to Prof. Ebenezer Badoe, HOD of Child Health department -Korle-Bu Teaching Hospital; Prof C. C. Mate-Kole a consultant neuropsychologist at Department of Psychiatry at Korle-Bu Teaching Hospital and his amazing team of researchers especially Dr. Ernest York an Endocrinologist, Dr. Vincent Boima a Nephrologist, Dr. Dzifa Dey a Rheumatologist, Dr. Delali Fiagbe a Psychiatrist, Mrs. Anna Gyaban-Mensah, Mrs. Ophelia Anarfi, Mrs. Priscilla Kushigbor, Ms Joycelyn Vogelsang, Ms. Rita Nkrumah, Ms. Marian Britwum; Dr. Boateng Wiafe an Ophthalmologist at Watborg Eye Services; Dr. Beatrice Wiafe Addai a consultant breast surgeon at Peace and Love Hospitals; Dr. Seth Wiafe a professor of Public Health at Loma Linda University; Mrs Charlotte Esi Myers the clinical psychologist at Lekma Hospital; the authorities and Tutors of Ghana International School; the Rare Disease Ghana Initiative team the parents of children with rare diseases in Ghana and the International community for their immense contribution to the success of this year’s rare disease day event in Ghana.
Follow this link to find out more about the Rare Disease Day at Ghana International School. https://gis.edu.gh/gis-infant-school-celebrates-rare-disease-day-on-28th-of-february-2018/