Activities for Rare Disease Day (2022)
Rare Disease Day aims to draw decision makers’ attention to the realities of persons living with a rare disease in order to take steps to address such needs while encouraging researchers to undertake more research in the area of rare diseases to augment the scarcity of literature on rare diseases in Hama especially. For the 5th time running, Rare Disease Ghana Initiative began with a social media campaign seeking to raise awareness and support among the general public, policy makers, public authorities, industry representatives, researchers, health professionals and persons with candid concerns in rare diseases. Interviews at mainstream media houses were done to create awareness with publications in online media platforms and a few newspapers.
The School Activation Program is a program introduced into the rare disease day celebration in Ghana to promote a culture of acceptance and inclusion among students in various academic institutions. It shapes the perspective of these future leaders about rare diseases. Since a great proportion of rare disease patients are children, this will help them understand the needs of those children hence, promoting inclusion. It also aims to reduce discrimination and stigmatization in schools against persons living with a rare diseases. This year, Rare Disease Ghana Initiative collaborated with Tema International school(TIS), Nagies Angel Educational Centre, Holy Trinity Lutheran School, International Community Schools, Association International School and the Physician Assistant Students of the Presbyterian University College.
Tema International School undertook a street quiz to edutain students on rare diseases. They also developed a child-friendly website aimed at increasing children all over the world’s knowledge of rare diseases. They had a photoshoot session as well to communicate their support for the rare disease community in Ghana and across the globe. Nagies Angel Educational Center in Kumasi performed a drama to educate the student body on the consequences of bad management practices adopted to manage a rare disease as well as social cultural factors that influences the care pathways. The student body also made a donation to the rare disease community in Ghana. Again, Holy Trinity Lutheran School presented on rare diseases to their mates and crowned the activity with a photoshoot. International Community Schools both in Accra and Kumasi made presentations to the lower primary schools on rare diseases. The Association International School, likewise, did a presentation to the lower grade students to increase their knowledge of Rare Diseases. A solidarity board and a photoshoot session was undertaken to showcase the school’s support to persons living with a rare disease in Ghana. Lastly, the Physician Assistant students of the Presbyterian University College embarked on a float to create awareness among the Agogo community in the Ashanti Region on Ghana. Below are some pictures from the various participating schools.
Ghana joined the global chain of lights event for the 2nd time. The Ibis Styles Hotel building was lit to increase rare disease awareness and draw stakeholders’ attention to the need to work on improving the quality of life of persons living with a rare disease in Ghana. At the lighting event, clinicians, consultants, patients and caregivers, researchers and the media were present to celebrate the day. Speaking at the event, a pediatric neurodevelopmental specialist with special interest in rare diseases from the Greater Accra Regional Hospital made a presentation on the need for enhanced care management and called on policy makers to as a matter of urgency put measures in place to safeguard the wellbeing of persons living with a rare disease in Ghana
The coordinator of the Ghana Rare Family Network coordinator also brought attendees up to speed on the realities of persons living with a rare disease and called on societies to be accommodative of persons living with a rare disease. Finally, the Board Chairman of Rare Disease Ghana Initiative, Mr. Joseph Abenney-Yeboah who is a charted accountant by profession highlighted some of the efforts of Rare Disease Ghana Initiative and called on policy makers, institutions and all relevant stakeholders to collaborate effectively to reduce the financial burden on families with persons living with a rare disease
Ghana was represented in the Rare Expo Dubai where our Executive Director made presentations on the key recommendations from the African Summit on Rare Diseases which was held in Accra on December 3rd, 2021.