28 February 2020 - 29 February 2020
Hosted by ALI KIMARA RARE DISEASE FOUNDATION AND TANZANIA SOCIETY OF HUMAN GENETICS
The Ali Kimara Rare Disease Foundation (AKRDF) named after Ali Kimara, a 9 years old boy who is living and battling with a rare disease since he was 2 years old. Ali also left his sibling, her sister Nasreen with a rare disease. The experiences and exposure to the reality and challenges of living with rare disease in Tanzania in terms of care and support is the reason behind the Foundation. The purpose is to raise awareness and advocate for the consideration and inclusion of rare diseases in the health and education policies to support children with rare diseases in Tanzania. And,
Tanzania Society of Human Genetics (TSHG) is a non profitable organization that was conceptualized in 2017 with the aim of conducting and coordinating human genetics research, training, diagnosis and advocacy in Tanzania and to engage with similar partners across the globe. The society was formed with the goal of coordinating human genetics research and activities in Tanzania in order to generate knowledge and recommendations for the prevention of genetic diseases and promotion of health.
Ali Kimara Rare Disease Foundation (AKRDF) and Tanzania Society of Human Genetic Association are set to commemorate the Rare Disease Day in Tanzania on 29 th February, 2020 as the event will bring together high level of policy makers.
We believe that, The Rare Disease Day commemoration in Tanzania will provide an opportunity to achieve two strategic gains. First, to wage a public awareness on the state and plight of the rare diseases in Tanzania. And second, to raise attention of political leadership and among policy makers on the necessity of inclusion of rare diseases into health and related government policies and programs.