The Rare Disease Ghana Initiative (RDGI), in partnership with Rare Disease International (RDI), has held the 2021 African Summit on rare diseases in Accra.
The hybrid event which comprised an in-person and virtual activity was themed “Achieving Universal Health through Equity”.
The 3-day summit pooled key delegates from 15 African countries together stakeholders to deliberate on ways to support the harmonization of care at the national and regional level and promote health and social equity for persons living with rare diseases.
It also afforded participants the opportunity to discuss the challenges and innovations shaping the rare disease landscape from a national, regional, and global perspectives as well as what to anticipate following the passing of the esolutione4Rare Bill by the United Nation for the global rare disease community.
Advocacy and Engagement Officer, Rare Disease Ghana Initiative, Esmeralda Arvo-Quardoo, in a statement said rare diseases reflect a group of conditions with low prevalence with many appearing at birth and often heavily debilitating.
“Though individually rare, collectively rare diseases pose a huge public health burden on the individual, their family, and the entire community. There are over 7,000 rare diseases, which affect more than 300 million people worldwide,” she said.
She said Persons Living with Rare Disease (PLWRD) and their families confront challenges including the lack of awareness of rare diseases, delayed diagnosis, and difficulty accessing appropriate treatment and care.
“Furthermore, many families living with a rare disease face social exclusion, discrimination, and stigma which hinder their full participation in society,” she said.
The participants among others recommended the need for a national and regional coordination to ensure access to care and treatment for persons living with a rare disease in Africa.
“Train healthcare practitioners to augment their knowledge of rare diseases and reduce diagnostic odysseys and loss of life. Strengthen patient participation and collaboration among various stakeholders at the national level,” they said.
The summit was sponsored by the International Federation of Pharmaceutical Manufacturers and Associations; Takeda Pharmaceuticals; Illumina; Roche Pharmaceuticals; Pfizer and with the kind support of representative from the World Health Organization, The African Union, Ministry of Health, Food and Drugs Authority and H3Africa.
Other patient groups present were Rare Disease Kenya, Rare Disease South Africa, Botswana Organization for Rare Disorders, Rare Diseases Nigeria, Rare Diseases Lesotho, Aux pas du Coeur, Child and Youth Care Zimbabwe, Fondation Internationale Tierno et MAriam, World Hemophilia Federation, Sickle Cell Foundation of Ghana, Special Mother’s Project, Thalassemia Foundation of Ghana, Rickmes Foundation, The Rheumatology Initiative, Ghana Hemophilia Society, Todah Connect Foundation, Share Care Ghana, Diabetes Youth Care, The Rheumatology Initiative, GNS Foundations, Global Alliance of Sickle Cell Disease Organization and Cardiac Community.