The African Summit on rare diseases has been hosted in Ghana. This was a hybrid event with the in-person event held at the Mensvic grand hotel.
The event was hosted by the Rare Disease Ghana Initiative (RDGI), the national alliance non-governmental advocacy organization for persons living with undiagnosed, genetic and rare disorders together with partnership from the Rare Disease International (RDI), the global alliance for persons living with a rare disease.
The conference themed ‘Achieving Universal Health through Equity’, had as its overarching aim the need to support the harmonization of care at the national and regional level, and to promote health and social equity for persons living with an undiagnosed and rare disease.
It is worthy of note that rare diseases reflect a group of conditions with low prevalence. Many appear at birth and are 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.
Persons living with a rare disease (PLWRD) and their families confront various challenges. Chief among these is a lack of awareness of rare diseases, delayed diagnosis, and difficult access to the appropriate treatment and care.
In addition, the continent’s health system must tackle competing priorities including the significant burden of infectious and non- communicable diseases (NCDs).
Health and social inequities differ in magnitude and impact between countries and regions.
For the African region, challenges include limited diagnostic infrastructure and expert centers, a lack of public awareness, the absence of national and regional frameworks, as well as inadequate research, data, and investment.
Furthermore, many families living with a rare disease face social exclusion, discrimination, and stigma which hinder their full participation in society.
The summit 3-day summit slated for the 1st-3rd December pooled key delegates from 15 African countries 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 Resolutione4Rare Bill by the United Nation for the global rare disease community.
The 3-day summit climaxed with 3 workshop sessions occurring concurrently where Participants of the workshops deliberated and brought to the fore solutions that could transform the rare disease ecosystem in Africa. Key among the recommendations made at the summit was:
1. The need for National and Regional coordination to ensure access to care and treatment for persons living with a rare disease in Africa
2. The engagement of regional law and policy makers such as the African Union and other like bodies to develop specifics policies with respect to rare diseases for the sub-region.
3. Train healthcare practitioners to augment their knowledge of rare diseases and reduce diagnostic Odysseys and loss of life.
4. Strengthen patient participation and collaboration among various stakeholders at the national level.
The summit was made possible through the kind sponsorship 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.