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Rare diseases in Tanzania: A National call for action to address policy and urgent needs for improved lives of affected individuals and their families

Current estimates show that there are approximately 6000 - 8000 rare Diseases (RDs) which affect over 300 million people worldwide. Individually, each RD affects <200,000 people mainly children because of limited survival, leaving a lifetime/life changing impact on affected individuals. Most RDs have a genetic origin, however the underlying causes and mechanisms of RDs are still largely unknown. In Tanzania, there is limited data on incidence, distribution and types of RDs. In addition, there is little awareness and understanding of RDs by the public, which has resulted in poor management and stigmatization of individuals with RDs. To address this problem, a RD day is commemorated globally every February with the aim of raising awareness among the general public and decision makers about RDs and their impacts on individuals’ lives. In addition, this platform is normally used to put emphasis on improvement and access to healthcare for affected individuals. From 2008 to 2020, the RD Day has been commemorated in more than 100 countries, initially in Europe and Canada. In Tanzania, the RD Day was first commemorated in 2016, and the most recent event was held on 29th February 2020. The later was co-hosted by the Ali Kimara Rare Diseases Foundation (AKRDF) and Tanzania Society of Human Genetics (TSHG). The event was graced by the Hon. Dr. Hamis Kigwangala Minister of tourism and natural resources who represented the Vice President of the United Republic of Tanzania as the Guest of Honour; and was attended by different high-level Government officials, representatives of cooperates, academia, civil society, and individuals with RDs and their families. The organizers and other stakeholders utilized the event to advocate for policies and interventions to address the challenges facing individuals and children with RDs. This paper documents highlights and presents the proposed call for actions of the 2020 RD day in Tanzania, with the overall goal of improved lives of patients and their families through increased access to adequate and high-quality health services and the development of appropriate policies.